Keeping well MS wise at least! I've succumbed to the winter coughs and colds doing the rounds, but in a funny way it's good to feel bad like anybody else. It's part of being "normal" again.
So here's an update of how my symptoms are:
Bladder is stable and medication not required to keep it under control. Pre-operation I took tolterodine (Detrusitol XL) but this is definitely no longer needed. My bladder functions completely normally.
Mood is much better. Again, prior to my angioplasty I took citalopram, but having gradually reduced the dose, I find I am OK without it.
Balance is about 90%, but even without MS it was never perfect, and my hand-eye co-ordination was so-so. Most of the time I'm OK, but if tired or as recently when running a temperature, it is a little bit off. I can stand on one leg and walk heel to toe without falling over. Couldn't do either pre-angioplasty.
I'm still not 100% confident/comfortable going up and down stairs, but I don't know if that is more mental than physical. I used to use some of the spasticity in my leg muscles to help me stand and I still have some residual stiffness and soreness which is especially noticeable on getting out of a chair and using stairs. I don't know if this is permanent or will gradually wear off.
Walking is good. My gait is not perfect, and I need to stop every so often for a rest, but I can go places. Before my operation, from the house to the car, or across the road felt like the height of my ambition, but now a stroll in Kew Gardens is an option again, even if I have to pause for a sit down now and then.
Best of all is the cog-fog. My brain is clear and I can hold a thought in my head. I don't struggle for words like I did. MS fatigue is a thing of the past, and I no longer need modafinil just to get through the day.
My own estimate is that I have regained about 80% functionality compared with pre-MS. So do I consider my operation a success? Oh yes! Would I go through it again if my symptoms return? In an instant.
I know that MS can grant remission, but I have not been like this for years, so in the words of the Mythbusters, CCSVI is plausible.
Wednesday 15 December 2010
Friday 10 December 2010
Cog Fog - how do you explain it?
One of the joys of life after "liberation" is not having to live with cog fog (loss of cognitive function) any more. This feature of MS is one of the invisible symptoms of MS, yet is responsible for many people having to give up work and start claiming disability benefits. I was often asked to describe what it was like, and I found it hard, not least because I was in the grip of cog fog myself.
Here I am looking back on it and still finding it hard to describe to anyone who has not had this most frustrating of conditions. One way was to liken it to the fuzzy head you get with a bad cold or flu, but I find now, having such a cold, it is not a good analogy.
Yes, my head can feel stuffed with cotton wool , but at least I am aware that "I" am still in there. With cog fog,often "I" was no longer able to be sure where "I" was. Like some fairytale character, I would wander through dense forests, through great blizzards of thick snow, searching for the castle where I and my life had been hidden. Or I could wade through waist high swamps that seemed to fill my skull, looking for the right word or phrase, only to hold my "prize" up in the air, and find it is not the one I sought.
Hence the "game" of MS charades, as we flail around wildly, trying to indicate what it is we are seeking. Or the strange language our close friends and family learn to interpret, getting the milk from the fridge when we ask them to get the cat from the washing machine. All the while retaining sufficient self awareness to realise that something is wrong, is it any wonder that people with MS feel frustration and anger and loss of self as well as bodily function?
So there is a common feature of post operative reports given by people on the various fora and websites. "I have my life back". "I have my self back"
There has been some debate about whether or not "the liberation procedure" is a sufficiently scientific label for the variations on venous angioplasty being carried out. But from the point of view of this person, I have been set free to live my life again.
Here I am looking back on it and still finding it hard to describe to anyone who has not had this most frustrating of conditions. One way was to liken it to the fuzzy head you get with a bad cold or flu, but I find now, having such a cold, it is not a good analogy.
Yes, my head can feel stuffed with cotton wool , but at least I am aware that "I" am still in there. With cog fog,often "I" was no longer able to be sure where "I" was. Like some fairytale character, I would wander through dense forests, through great blizzards of thick snow, searching for the castle where I and my life had been hidden. Or I could wade through waist high swamps that seemed to fill my skull, looking for the right word or phrase, only to hold my "prize" up in the air, and find it is not the one I sought.
Hence the "game" of MS charades, as we flail around wildly, trying to indicate what it is we are seeking. Or the strange language our close friends and family learn to interpret, getting the milk from the fridge when we ask them to get the cat from the washing machine. All the while retaining sufficient self awareness to realise that something is wrong, is it any wonder that people with MS feel frustration and anger and loss of self as well as bodily function?
So there is a common feature of post operative reports given by people on the various fora and websites. "I have my life back". "I have my self back"
There has been some debate about whether or not "the liberation procedure" is a sufficiently scientific label for the variations on venous angioplasty being carried out. But from the point of view of this person, I have been set free to live my life again.
Thursday 9 December 2010
Notes on the CCSVI vs autoimmune theories part 2
Myelin antigen reactive T cells in cerebrovascular diseases
Modulation of Post-ischaemic immune response in stroke
Stroke and the resulting predisposition to develop immune reaction to myelin basic protein
The "auto-immune" reaction of T-cells in spinal chord injury
Carbon monoxide poisoning, hypoxia and changes to myelin basic protein and immunological response
Post-ischaemic immune response to stroke
Neurogenic bladder and demyelination following brain hypoxia caused by a car accident
Short term symptoms suggestive of demyelination following carbon monoxide poisoning
So damage the brain, provide some kind of inflammatory insult,and immune reaction to myelin follows.
At last we begin to see which is the chicken and which the egg, and that this response is not unique to MS. Also, we see that short term oxygen deprivation of the brain causes some of the common symptoms of MS.
So what could cause periodic or progressive inflammation of the central nervous system, and hypoxia of the tissues? CCSVI? Removing the obstruction causing CCSVI does appear to resolve many of the symptoms of MS.
If MS is a chronic, ongoing hypoxic insult to the brain and spine, due to CCSVI...it could be exacerbated by any event when further lessens oxygen to the brain...high altitude, viral or bacterial infection, vasoconstriction. More lesions are formed, the damage continues.
The hypoxia created by CCSVI is chronic, ongoing, but much slower than what happened in the last two studies above. It takes many years to develop damage. Restore oxygen to the brain and spine, and healing and remyelination should take place.
It may also shine a light on the much debated hyperbaric oxygen treatment. So long as it at a sufficient level for adequate penetration of the brain and spinal tissues, CCSVI may explain why some MS patients received benefit, especially in reduction of neurogenic bladder.
On a totally different note, could CCSVI in the non-MS population explain the incidence of ME (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome)? Migraines? Bends in seemingly healthy SCUBA divers with "nominal" dive profiles?
Modulation of Post-ischaemic immune response in stroke
Stroke and the resulting predisposition to develop immune reaction to myelin basic protein
The "auto-immune" reaction of T-cells in spinal chord injury
Carbon monoxide poisoning, hypoxia and changes to myelin basic protein and immunological response
Post-ischaemic immune response to stroke
Neurogenic bladder and demyelination following brain hypoxia caused by a car accident
Short term symptoms suggestive of demyelination following carbon monoxide poisoning
So damage the brain, provide some kind of inflammatory insult,and immune reaction to myelin follows.
At last we begin to see which is the chicken and which the egg, and that this response is not unique to MS. Also, we see that short term oxygen deprivation of the brain causes some of the common symptoms of MS.
So what could cause periodic or progressive inflammation of the central nervous system, and hypoxia of the tissues? CCSVI? Removing the obstruction causing CCSVI does appear to resolve many of the symptoms of MS.
If MS is a chronic, ongoing hypoxic insult to the brain and spine, due to CCSVI...it could be exacerbated by any event when further lessens oxygen to the brain...high altitude, viral or bacterial infection, vasoconstriction. More lesions are formed, the damage continues.
The hypoxia created by CCSVI is chronic, ongoing, but much slower than what happened in the last two studies above. It takes many years to develop damage. Restore oxygen to the brain and spine, and healing and remyelination should take place.
It may also shine a light on the much debated hyperbaric oxygen treatment. So long as it at a sufficient level for adequate penetration of the brain and spinal tissues, CCSVI may explain why some MS patients received benefit, especially in reduction of neurogenic bladder.
On a totally different note, could CCSVI in the non-MS population explain the incidence of ME (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome)? Migraines? Bends in seemingly healthy SCUBA divers with "nominal" dive profiles?
Monday 6 December 2010
The dream of myelin repair is a step closer
A new study offers yet another glimmer of hope for people with MS, that their body may be able to repair damage to the myelin coating on their nerves by stimulating the brain's own stem cells.
The results come from the Cambridge Centre for Myelin Repair and the Edinburgh Centre for Translational Research.
What did the study show? Researchers looked at ways that the brain's own stem cells repair myelin in people with MS. Using samples from the MS Society's Tissue Bank, they identified a specific type of molecule called RXR-gamma, which appears to be important in promoting myelin repair. They found that targeting RXR-gamma in rats encouraged the brain's own stem cells to regenerate myelin.
The work was published in the journal Nature Neuroscience and led by Professors Robin Franklin from Cambridge University and Charles ffrench-Constant from the University of Edinburgh.
What does this mean for people with MS? RXR-gamma is already widely studied in cancer biology and a drug already exists that targets the molecule in cancer. Researchers are now looking at how this might be used as an MS treatment, but this is early work.
What happens next? The next step is working towards setting up clinical trials to establish whether existing treatments will be safe and effective in people with MS. Before anyone dashes off to their neurologists, trials could take 5 years, and a treatment 15 years away.
But, combined with the possibility of CCSVI to stay progression and buy us the time to wait, things could be looking good for us all.
http://mstrust.org.uk/news/msinthemedia.jsp
The results come from the Cambridge Centre for Myelin Repair and the Edinburgh Centre for Translational Research.
What did the study show? Researchers looked at ways that the brain's own stem cells repair myelin in people with MS. Using samples from the MS Society's Tissue Bank, they identified a specific type of molecule called RXR-gamma, which appears to be important in promoting myelin repair. They found that targeting RXR-gamma in rats encouraged the brain's own stem cells to regenerate myelin.
The work was published in the journal Nature Neuroscience and led by Professors Robin Franklin from Cambridge University and Charles ffrench-Constant from the University of Edinburgh.
What does this mean for people with MS? RXR-gamma is already widely studied in cancer biology and a drug already exists that targets the molecule in cancer. Researchers are now looking at how this might be used as an MS treatment, but this is early work.
What happens next? The next step is working towards setting up clinical trials to establish whether existing treatments will be safe and effective in people with MS. Before anyone dashes off to their neurologists, trials could take 5 years, and a treatment 15 years away.
But, combined with the possibility of CCSVI to stay progression and buy us the time to wait, things could be looking good for us all.
http://mstrust.org.uk/news/msinthemedia.jsp
Sunday 5 December 2010
MBP reactive T cells NOT unique to MS
Those of you who have followed my ramblings know that I am grateful to Joan Beal and her wonderful Facebook Site on CCSVI. A tireless seeker after truth, she brings much useful information to light. It was in part what I learned there that started me on my own journey.
Tonight I read her latest note, and felt it was worth sharing in whole with you.
"Since the beginning of my journey with Jeff's MS diagnosis in 2007, I've been told by neurologists that MS is an auto-immune disease and this can be measured by Myelin Basic Protein autoreactive t-cells (the bit of the immune system that is attacking our nerves) found in cerebral spinal fluid, and that this is exclusive to MS. And this is part of the target for immuno-modulating therapies. But what if these MBP auto-reactive T-cells are NOT really exclusive to MS? Guess what? They're not.
Here is a study where the CSF of patients with cerebrovascular disease is tested. And those with MS and CVD have the same range of MBP reactive T-cells in the CSF. This leads the researchers to posit that this immune reaction is secondary to damage in the CNS. Which makes me wonder....is the CSF of stroke patients and those with hypoxia or ischemic events regularly tested? And if so, are these people told they have an immune system disease? Why has the research of MS as a cerebrovascular disease been so fraught with controversy?
Myelin antigen reactive T cells in cerebrovascular diseases
W.Z.WANG,T.OLSSON,V.KOSTULAS,B.HOJEBERG,H.P.EKRE&H.LINK
Department of Neurology, Karolinska Institutet, Huddinge Hospital, Stockholm, Sweden
Quote:
INTRODUCTION In acute ischaemic cerebrovascular diseases (CVD), mononuclear cells appear in the brain parenchyma within 1-2 days and increase in number over the ensuing 5-30 days[1].Also in cerebrospinal fluid (CSF), elevated numbers of mononuclear cells may be detected. These cells are considered to mainly represent monocytes-macrophages, but there are no detailed studies on their lineage with,e.g.,antibodies to different cell surface markers. Oligoclonal IgG bands are present in the CSF while missing in corresponding serum, in about 10% of patients with CVD [2,3].A local B cell response directed to neurotropic viruses,as in patients with multiple sclerosis, has been reported in those patients with CVD who displayed oligoclonal IgG bands in CSF [4].Taken together,these observations indicate that patients with acute CVD may display an intrathecal immune response......
The strong increases in numbers of MBP, MBP peptide and PLP reactive T cells in blood, and of MBP reactive T cells in CSF, which we here report in our patients with Cerebro Vascular Disease, are in the same range as we have previously observed in MS [10,11].Thus, both diseases are accompanied by an expanded pool of myelin autoreactive T cells and they may well be secondary to damage to the central nervous system.
Here is the full paper in PDF form.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554378/pdf/clinexpimmunol00048-0161.pdf
It's really dense and sciency....but it is worth the read.
If these autoreactive t-cells are found in people that have strokes or cerebrovascular disease, and are NOT exclusive to MS, how on God's green earth can we say that MS is auto-immune?
It's not. I believe MS is a disease of the vascular system which creates a secondary reaction by the immune system. I believe Dr. Zamboni discovered the engine in MS---and it is CCSVI"
Sorry if this is hard going, but it is an important challenge to those, including neurologists, who doubt the basis of CCSVI, by saying that only the auto-immune theory has solid scientific backing.
Tonight I read her latest note, and felt it was worth sharing in whole with you.
"Since the beginning of my journey with Jeff's MS diagnosis in 2007, I've been told by neurologists that MS is an auto-immune disease and this can be measured by Myelin Basic Protein autoreactive t-cells (the bit of the immune system that is attacking our nerves) found in cerebral spinal fluid, and that this is exclusive to MS. And this is part of the target for immuno-modulating therapies. But what if these MBP auto-reactive T-cells are NOT really exclusive to MS? Guess what? They're not.
Here is a study where the CSF of patients with cerebrovascular disease is tested. And those with MS and CVD have the same range of MBP reactive T-cells in the CSF. This leads the researchers to posit that this immune reaction is secondary to damage in the CNS. Which makes me wonder....is the CSF of stroke patients and those with hypoxia or ischemic events regularly tested? And if so, are these people told they have an immune system disease? Why has the research of MS as a cerebrovascular disease been so fraught with controversy?
Myelin antigen reactive T cells in cerebrovascular diseases
W.Z.WANG,T.OLSSON,V.KOSTULAS,B.HOJEBERG,H.P.EKRE&H.LINK
Department of Neurology, Karolinska Institutet, Huddinge Hospital, Stockholm, Sweden
Quote:
INTRODUCTION In acute ischaemic cerebrovascular diseases (CVD), mononuclear cells appear in the brain parenchyma within 1-2 days and increase in number over the ensuing 5-30 days[1].Also in cerebrospinal fluid (CSF), elevated numbers of mononuclear cells may be detected. These cells are considered to mainly represent monocytes-macrophages, but there are no detailed studies on their lineage with,e.g.,antibodies to different cell surface markers. Oligoclonal IgG bands are present in the CSF while missing in corresponding serum, in about 10% of patients with CVD [2,3].A local B cell response directed to neurotropic viruses,as in patients with multiple sclerosis, has been reported in those patients with CVD who displayed oligoclonal IgG bands in CSF [4].Taken together,these observations indicate that patients with acute CVD may display an intrathecal immune response......
The strong increases in numbers of MBP, MBP peptide and PLP reactive T cells in blood, and of MBP reactive T cells in CSF, which we here report in our patients with Cerebro Vascular Disease, are in the same range as we have previously observed in MS [10,11].Thus, both diseases are accompanied by an expanded pool of myelin autoreactive T cells and they may well be secondary to damage to the central nervous system.
Here is the full paper in PDF form.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554378/pdf/clinexpimmunol00048-0161.pdf
It's really dense and sciency....but it is worth the read.
If these autoreactive t-cells are found in people that have strokes or cerebrovascular disease, and are NOT exclusive to MS, how on God's green earth can we say that MS is auto-immune?
It's not. I believe MS is a disease of the vascular system which creates a secondary reaction by the immune system. I believe Dr. Zamboni discovered the engine in MS---and it is CCSVI"
Sorry if this is hard going, but it is an important challenge to those, including neurologists, who doubt the basis of CCSVI, by saying that only the auto-immune theory has solid scientific backing.
Saturday 4 December 2010
Casting off from the dock.
While reading the various CCSVI sites and fora, I came across a lovely analogy today that I'd like to share with you. Perhaps because I love the sea and sailing, I found it resonated deeply with me, but I think it has something to say to each and everyone of us.
It is from ThisisMS, posted by a Capt Boo:
Reading some of the more recent posts on this forum, I am reminded of a similar experience 8 or 9 years ago. I had sold my business and decided I wanted to go sailing, although the most sailing experience I had was with a Sunfish in high school. I joined a couple of sailing related forum sites. I had a lot to learn. Mixed in with the helpful posts that furthered the conversation and help enlighten me were the few that immediately responded by telling the helpful poster that they had no clue what they were talking about. It turns out that these posters had never actually done a whole lot more sailing than me. They were content to sit on the dock and tell other people how they should manage their lives. I ended up restoring a 25 year old boat and spending the next four years sailing the Caribbean in a 36' sailboat having the time of my life, sailing from Texas to Venezuela and back. Probably would still be there if MS had not entered my life.
My point is, you can either sit on the dock and pontificate or you can go sailing. Sure, actually crossing oceans is more dangerous, but it has greater rewards and as Reese Palley says, "There be no dragons." ......
It is a common phenomenon in sailing circles that many would be sailing adventurers never go, because conditions are not quite right. The weather is not perfect, it's too expensive right now,or they want to do just one more year at work, before they retire, sell up and go sailing.
They sit by the dock, gazing wistfully into the sunset, watching others come and go. Or, from the comfort of their firesides, criticise, citing the examples where things went wrong. Where a ship foundered, or the perfect storm that brings disaster, ignoring the thousands of boats that sail our seas safely.
But there are many who have cast off from the dock and are having wonderful experiences, often on a shoestring budget. They prepare their boat the best they can, and make sure they have the knowledge and wherewithal to deal with most situations and then they go.
So with CCSVI.
The time has come for us to cast off from the dock. Enough talking. Let's get on with trials, but ones that compare like with like. But at the same time as the deeply scientific, we need to consider the human element of multiple sclerosis. Offer treatment to those prepared to take the risk, but instead of ignoring them thereafter, monitor closely their progress or lack of it.
While vascular surgeons and interventional radiologists investigate and work on the technicalities, there is much for neurologists to do in assessing patient outcomes and disease progression. and there will be many for whom CCSVI is irrelevant, too late or unable to deal with their variation on the disease.
“Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” Mark Twain
It is from ThisisMS, posted by a Capt Boo:
Reading some of the more recent posts on this forum, I am reminded of a similar experience 8 or 9 years ago. I had sold my business and decided I wanted to go sailing, although the most sailing experience I had was with a Sunfish in high school. I joined a couple of sailing related forum sites. I had a lot to learn. Mixed in with the helpful posts that furthered the conversation and help enlighten me were the few that immediately responded by telling the helpful poster that they had no clue what they were talking about. It turns out that these posters had never actually done a whole lot more sailing than me. They were content to sit on the dock and tell other people how they should manage their lives. I ended up restoring a 25 year old boat and spending the next four years sailing the Caribbean in a 36' sailboat having the time of my life, sailing from Texas to Venezuela and back. Probably would still be there if MS had not entered my life.
My point is, you can either sit on the dock and pontificate or you can go sailing. Sure, actually crossing oceans is more dangerous, but it has greater rewards and as Reese Palley says, "There be no dragons." ......
It is a common phenomenon in sailing circles that many would be sailing adventurers never go, because conditions are not quite right. The weather is not perfect, it's too expensive right now,or they want to do just one more year at work, before they retire, sell up and go sailing.
They sit by the dock, gazing wistfully into the sunset, watching others come and go. Or, from the comfort of their firesides, criticise, citing the examples where things went wrong. Where a ship foundered, or the perfect storm that brings disaster, ignoring the thousands of boats that sail our seas safely.
But there are many who have cast off from the dock and are having wonderful experiences, often on a shoestring budget. They prepare their boat the best they can, and make sure they have the knowledge and wherewithal to deal with most situations and then they go.
So with CCSVI.
The time has come for us to cast off from the dock. Enough talking. Let's get on with trials, but ones that compare like with like. But at the same time as the deeply scientific, we need to consider the human element of multiple sclerosis. Offer treatment to those prepared to take the risk, but instead of ignoring them thereafter, monitor closely their progress or lack of it.
While vascular surgeons and interventional radiologists investigate and work on the technicalities, there is much for neurologists to do in assessing patient outcomes and disease progression. and there will be many for whom CCSVI is irrelevant, too late or unable to deal with their variation on the disease.
“Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” Mark Twain
Saturday 27 November 2010
It's the little things that make the difference
An interesting time since my last entry.
The big thing, at least to outsiders, is that I was interviewed, along with a neurologist,and a CCSVI specialist from Poland, for a BBC Radio 4 programme, Broadcasting House, which is doing a segment on MS and CCSVI. I had hoped that it would be broadcast this sunday, but it looks like other news has overtaken it, and the MS item will go out another time. We may be the most important matter in our own lives, but not in the overall scheme of things.
The interview made me think about the changes my operation has wrought in my life. Yes, the big things, like my massively improved walking ability, being able to work again, are important. The things that have made the greatest impact on my quality of life are what, to someone without MS, may seem trivial.
Being able to tie my own shoelaces. Standing up at the bathroom sink to clean my own teeth. Putting on a pair of trousers without having to sit down or fall over. Do the zip up on my coat. Make someone a cup of tea and be able to carry it in from the kitchen without slopping half of it on the floor. Indeed, making my work colleagues a cup of coffee, that wasn't half full.
On the day of my interview, I baked half a dozen blueberry muffins to offer to my visitors. So what, you may say. But that small thing encapsulated several of the earth shattering changes to my life.
I could read, make sense of, and follow a recipe. I put the muffin tin into the hot oven and took out the finished articles without burning myself or the house. It was achieved, start to finish, in under an hour, instead of all day. I didn't collapse, exhausted, part way through, or even at the end.
It is hard to explain to someone who has not experienced it, just how good something like that makes you feel.
The small things add up to make a world of difference.
The big thing, at least to outsiders, is that I was interviewed, along with a neurologist,and a CCSVI specialist from Poland, for a BBC Radio 4 programme, Broadcasting House, which is doing a segment on MS and CCSVI. I had hoped that it would be broadcast this sunday, but it looks like other news has overtaken it, and the MS item will go out another time. We may be the most important matter in our own lives, but not in the overall scheme of things.
The interview made me think about the changes my operation has wrought in my life. Yes, the big things, like my massively improved walking ability, being able to work again, are important. The things that have made the greatest impact on my quality of life are what, to someone without MS, may seem trivial.
Being able to tie my own shoelaces. Standing up at the bathroom sink to clean my own teeth. Putting on a pair of trousers without having to sit down or fall over. Do the zip up on my coat. Make someone a cup of tea and be able to carry it in from the kitchen without slopping half of it on the floor. Indeed, making my work colleagues a cup of coffee, that wasn't half full.
On the day of my interview, I baked half a dozen blueberry muffins to offer to my visitors. So what, you may say. But that small thing encapsulated several of the earth shattering changes to my life.
I could read, make sense of, and follow a recipe. I put the muffin tin into the hot oven and took out the finished articles without burning myself or the house. It was achieved, start to finish, in under an hour, instead of all day. I didn't collapse, exhausted, part way through, or even at the end.
It is hard to explain to someone who has not experienced it, just how good something like that makes you feel.
The small things add up to make a world of difference.
Sunday 21 November 2010
Two months on, still looking good
It's two months now since I had my operation in Poland, and things are still going really well.
I have kept all the gains I made in the early days. My feet are still warm and I have sensation below the waist. Bladder control has normalised. Fatigue has gone, although I cannot push myself too far. I am back working part time, and loving it. I very rarely "talk MS" any more, where I pick totally the wrong word, unless I am getting overtired. My gait has improved, and I can walk further.
I filled in my status update on CCSVI tracking today and this made me focus on what happened. My personal graph is starting to look more meaningful, and it is good to see how far I have come.
Today we went for a walk to some local springs. I managed to cross the water via some stepping stones - a small set of steps for a man, but a giant leap for this woman.
I have kept all the gains I made in the early days. My feet are still warm and I have sensation below the waist. Bladder control has normalised. Fatigue has gone, although I cannot push myself too far. I am back working part time, and loving it. I very rarely "talk MS" any more, where I pick totally the wrong word, unless I am getting overtired. My gait has improved, and I can walk further.
I filled in my status update on CCSVI tracking today and this made me focus on what happened. My personal graph is starting to look more meaningful, and it is good to see how far I have come.
Today we went for a walk to some local springs. I managed to cross the water via some stepping stones - a small set of steps for a man, but a giant leap for this woman.
Saturday 20 November 2010
Sad news brings raging controversy
The sad news that a Canadian man has died following complications from his CCSVI surgery hit the web yesterday. Apparently he died last month, but his family felt unable to speak until now.
35 year old Mahir Mostic from Ontario travelled to Costa Rica to have the procedure carried out in June. After experiencing improvement, his symptoms worsened, and after an ultrasound ,he returned to Costa Rica. A blood clot had formed in his vein, where a stent had been placed. Drugs were injected into the clot to try and disperse it, but sadly he died, reportedly of internal bleeding, on October 19th. News Coverage
As details emerged it triggered a torrent of debate about whether or not his death could have been avoided, either by being able to have the initial operation in Canada, or if suitable follow-up treatment had been available. Reactions
Reports of him being refused treatent for the complications of his operation, along with allegations of patients being delisted by their neurologists and GPs after having the procedure, have fuelled the heated discussions.
This has prompted both the Canadian MS Society and College of Physicians and Surgeons to issue statements, but so far the heat has not gone away.
See here
35 year old Mahir Mostic from Ontario travelled to Costa Rica to have the procedure carried out in June. After experiencing improvement, his symptoms worsened, and after an ultrasound ,he returned to Costa Rica. A blood clot had formed in his vein, where a stent had been placed. Drugs were injected into the clot to try and disperse it, but sadly he died, reportedly of internal bleeding, on October 19th. News Coverage
As details emerged it triggered a torrent of debate about whether or not his death could have been avoided, either by being able to have the initial operation in Canada, or if suitable follow-up treatment had been available. Reactions
Reports of him being refused treatent for the complications of his operation, along with allegations of patients being delisted by their neurologists and GPs after having the procedure, have fuelled the heated discussions.
This has prompted both the Canadian MS Society and College of Physicians and Surgeons to issue statements, but so far the heat has not gone away.
See here
Thursday 18 November 2010
Comparisons, or this made me think.
An article appeared in The Lancet this week provoking quite a bit of coverage in the UK press, which made me draw some comparisons with how CCSVI is being considered by the medical world.
The original proof of concept study for a "revolutionary" medical procedure was published in April 2009, involving 50 patients, about the same time and number as Dr Zamboni's work.
Here we are in November 2010, and a further multicentre study, double blinded, has been carried out and the results published for the blood pressure treatment. Yet it is not that disimilar, in that a catheter is threaded in via the femoral vein to the target, in this case the kidney ,where the nerves are disabled with a blast of high frequency energy. Yet CCSVI and its treatment is still hotly debated and limited trials are just recruiting, although many centres around the world are now offering it, at a price.
The press headlines are similar. The Independent newsaper says "Simple surgery offers hope to millions with high blood pressure". http://www.independent.co.uk/life-style/health-and-families/health-news/simple-surgery-offers-hope-to-millions-with-high-blood-pressure-2137057.html
But as we are warned to avoid a highly dangerous procedure that may have serious consequences, it is described here as "The minimally invasive procedure".
Makes you think.
The original proof of concept study for a "revolutionary" medical procedure was published in April 2009, involving 50 patients, about the same time and number as Dr Zamboni's work.
Here we are in November 2010, and a further multicentre study, double blinded, has been carried out and the results published for the blood pressure treatment. Yet it is not that disimilar, in that a catheter is threaded in via the femoral vein to the target, in this case the kidney ,where the nerves are disabled with a blast of high frequency energy. Yet CCSVI and its treatment is still hotly debated and limited trials are just recruiting, although many centres around the world are now offering it, at a price.
The press headlines are similar. The Independent newsaper says "Simple surgery offers hope to millions with high blood pressure". http://www.independent.co.uk/life-style/health-and-families/health-news/simple-surgery-offers-hope-to-millions-with-high-blood-pressure-2137057.html
But as we are warned to avoid a highly dangerous procedure that may have serious consequences, it is described here as "The minimally invasive procedure".
Makes you think.
Monday 15 November 2010
Thank you to Dr Zamboni
I know there is not much time, but everyone out there who's life has been touched by Dr Zamboni and his work, please read and respond to this call :
Our friend and Alliance director Michelle Brown will be meeting Dr. Zamboni on Friday next week---
She would love to present him with a pile (giant bag full?) of thank you notes from all of you.
We know how many have expressed their desire to thank Dr. Zamboni, so now here's an opportunity--
Please get thank you letters and notes to Michelle by Wednesday, November 17th
michelle.brown@ccsvi.org
and she'll print them out.
Or, if you have time and inclination, a hand written note or letter is always appreciated. Send to:
Michelle Brown
Business Journals
1384 Broadway,
11th fl
Ny, NY 10018
Ph 212-710-7413 begin_of_the_skype_highlighting 212-710-7413 end_of_the_skype_highlighting
Let's make this a special presentation for Dr. Zamboni!
via Joan Beal and her Facebook site, CCSVI in Multiple Sclerosis
Collecting Thank Yous for Dr. Zamboni
by CCSVI in Multiple Sclerosis on Friday, 12 November 2010 at 15:18
She would love to present him with a pile (giant bag full?) of thank you notes from all of you.
We know how many have expressed their desire to thank Dr. Zamboni, so now here's an opportunity--
Please get thank you letters and notes to Michelle by Wednesday, November 17th
michelle.brown@ccsvi.org
and she'll print them out.
Or, if you have time and inclination, a hand written note or letter is always appreciated. Send to:
Michelle Brown
Business Journals
1384 Broadway,
11th fl
Ny, NY 10018
Ph 212-710-7413 begin_of_the_skype_highlighting 212-710-7413 end_of_the_skype_highlighting
Let's make this a special presentation for Dr. Zamboni!
via Joan Beal and her Facebook site, CCSVI in Multiple Sclerosis
Saturday 13 November 2010
More CCSVI success
I was delighted today to meet with one of my friends who has been out to Bulgaria for the liberation procedure. For the first time in a long time she was able to walk across from the car without the use of a stick. The grins on her face and that of her husband said it all really.
Prior to going out there, she used a wheelchair or mobility scooter for any distance, and a cane (plus husband) or two canes for short walks. She had gone from working full time to a couple of days a week and even that was getting too much. Two weeks on from her operation and she goes back to work tomorrow.
Like most people I speak to, her feet are now warm, much to her husband's delight. Her balance is back, although her legs are still weak after so long. She has visited a supermarket, again for the first time and goes for walks. Her back pain has resolved
She spent two hours in the operating theatre, LJV 90%, RJV 80% Azygous 70% blocked. Unlike me, she was not sedated during the procedure and felt a definite "whooshing" as the blockages were cleared. A lifelong lump behind her right ear, which had been described as a fluid filled cyst, has now vanished. The CDs of her operation make fascinating viewing.
Another friend, who was much further along with MS, can now put gloves on hands that were virtually useless, and move her legs in bed.
The evidence of benefit from this approach is building all the time and the grins are spreading.
Prior to going out there, she used a wheelchair or mobility scooter for any distance, and a cane (plus husband) or two canes for short walks. She had gone from working full time to a couple of days a week and even that was getting too much. Two weeks on from her operation and she goes back to work tomorrow.
Like most people I speak to, her feet are now warm, much to her husband's delight. Her balance is back, although her legs are still weak after so long. She has visited a supermarket, again for the first time and goes for walks. Her back pain has resolved
She spent two hours in the operating theatre, LJV 90%, RJV 80% Azygous 70% blocked. Unlike me, she was not sedated during the procedure and felt a definite "whooshing" as the blockages were cleared. A lifelong lump behind her right ear, which had been described as a fluid filled cyst, has now vanished. The CDs of her operation make fascinating viewing.
Another friend, who was much further along with MS, can now put gloves on hands that were virtually useless, and move her legs in bed.
The evidence of benefit from this approach is building all the time and the grins are spreading.
Friday 12 November 2010
Language barriers
I have been spending some time thinking about the difference in mind set between the neurologist and the person with MS, and have come to the conclusion that part of the problem is the difference in language used by the two groups to describe the same thing.
As the MS patient we describe the loss of a function, the loss of something we had or were able to do before. Loss is associated with grief and anger, and hope that we may find it again. Loss affects us on a very deep level, particularly when it is cumulative as in MS. Each time we must try to acclimatise ourselves to a new normal, while grieving for the one we left behind. The language we use is emotive as we describe our personal story.
For the neurologists, there are diseases and descriptions such as ataxia, aphasia; files and notes, to develop a case history. Which is not the story of Joe and his battle with his daily life. There is no narrative. Instead it is a catalogue of deficits and disorders. Deliberately depersonalised, the medical professions use language to maintain objectivity and distance from their patients. Emotion is excluded.
For anyone who has studied a foreign language, they will appreciate that it is not just a matter of memorising vocabulary and the rules of grammar. It both expresses and directs the way we think. This has been reflected in the removal from everyday use of words with negative connotations, particularly those used in the past to describe race, colour or beliefs.
So perhaps it is no surprise that we find ourselves on different sides in the debate over CCSVI, staring at the opposition in a form of despairing bafflement. Why can they not understand our position?
As the MS patient we describe the loss of a function, the loss of something we had or were able to do before. Loss is associated with grief and anger, and hope that we may find it again. Loss affects us on a very deep level, particularly when it is cumulative as in MS. Each time we must try to acclimatise ourselves to a new normal, while grieving for the one we left behind. The language we use is emotive as we describe our personal story.
For the neurologists, there are diseases and descriptions such as ataxia, aphasia; files and notes, to develop a case history. Which is not the story of Joe and his battle with his daily life. There is no narrative. Instead it is a catalogue of deficits and disorders. Deliberately depersonalised, the medical professions use language to maintain objectivity and distance from their patients. Emotion is excluded.
For anyone who has studied a foreign language, they will appreciate that it is not just a matter of memorising vocabulary and the rules of grammar. It both expresses and directs the way we think. This has been reflected in the removal from everyday use of words with negative connotations, particularly those used in the past to describe race, colour or beliefs.
So perhaps it is no surprise that we find ourselves on different sides in the debate over CCSVI, staring at the opposition in a form of despairing bafflement. Why can they not understand our position?
Wednesday 10 November 2010
The importance of follow-up studies.
I know I have written about this before, but I cannot over-emphasise the importance of recording data on patients having the liberation procedure and what happens to them subsequently.
Kuwait is recording data, and the clinic I went to in Poland is doing 6-month and 12-month follow-up with their patients, but because so many MS patients are travelling long distances at considerable personal expense to have the treatment done, how many will attend their check-ups?
If we are to get a true picture of the effectiveness or otherwise of CCSVI treatment, then, in my view, longitudinal prospective studies (Studies in which individuals are followed up over time to assess who develops a certain outcome)are the way to go.
Double blind studies may be the gold standard for drugs, where it is important to separate benefits seen from the effects of the drug, and those seen from the effect of just being in a study. But I am not convinced that this is appropriate for a surgical procedure. Would you do this for a heart transplant to assess the long term result on the patient? I don't see that it is ethical.
But a longitudinal study of those on whom the procedure has been carried out, detailing change in symptoms over time, and over a large enough patient population, should give a true picture of the value and effectiveness. Although the progress of MS in an individual patient is erratic and virtually impossible to predict, there is sufficient data available to indicate the prognosis for a large patient population and to provide averages to compare predicted outcomes over time, and those actually experienced. (For example this paper)
Some other patient populations ,such as those on Tysabri, are being very carefully monitored, because of the known and very real risk of PML, an often fatal brain infection. As this is currently the most effective drug therapy in slowing progression and reducing relapses in MS, they could provide a useful comparison group.
In the meantime, what can we do? Pressure on our medical and MS societies, certainly. But please, if you are planning or have had the angioplasty, please record your information on CCSVI Tracking. Negative results are as important, if not more so than positive ones, to gain some understanding of this disease we live with.
By using the power of the web, we have the potential to carry out possibly the largest study ever. So take part.
Kuwait is recording data, and the clinic I went to in Poland is doing 6-month and 12-month follow-up with their patients, but because so many MS patients are travelling long distances at considerable personal expense to have the treatment done, how many will attend their check-ups?
If we are to get a true picture of the effectiveness or otherwise of CCSVI treatment, then, in my view, longitudinal prospective studies (Studies in which individuals are followed up over time to assess who develops a certain outcome)are the way to go.
Double blind studies may be the gold standard for drugs, where it is important to separate benefits seen from the effects of the drug, and those seen from the effect of just being in a study. But I am not convinced that this is appropriate for a surgical procedure. Would you do this for a heart transplant to assess the long term result on the patient? I don't see that it is ethical.
But a longitudinal study of those on whom the procedure has been carried out, detailing change in symptoms over time, and over a large enough patient population, should give a true picture of the value and effectiveness. Although the progress of MS in an individual patient is erratic and virtually impossible to predict, there is sufficient data available to indicate the prognosis for a large patient population and to provide averages to compare predicted outcomes over time, and those actually experienced. (For example this paper)
Some other patient populations ,such as those on Tysabri, are being very carefully monitored, because of the known and very real risk of PML, an often fatal brain infection. As this is currently the most effective drug therapy in slowing progression and reducing relapses in MS, they could provide a useful comparison group.
In the meantime, what can we do? Pressure on our medical and MS societies, certainly. But please, if you are planning or have had the angioplasty, please record your information on CCSVI Tracking. Negative results are as important, if not more so than positive ones, to gain some understanding of this disease we live with.
By using the power of the web, we have the potential to carry out possibly the largest study ever. So take part.
Sunday 7 November 2010
Emotional incontinence
Just as I spoke about improvement in my emotional control following my procedure, it seems that a new drug has been approved by the FDA to reduce the effects of Pseudobulbar Affect (PBA) which can lead to uncontrollable and sometimes inappropriate laughing and crying..It is a combination of dextromethorphan, usually used as a cough suppressant, and quinidine, used to control the heart.
Nuedexta as it is called was approved on 30th October , and the company, Avenir, expects it to be available by prescription first quarter 2011 in the USA. UK patients don't hold your breath.
Interestingly, if you Google for Nuedexta, the first item is "Avanir Pharma shares double on FDA drug approval".
Gilenya, the new oral disease modifying drug for MS, is also to be available on prescription shortly. Whilst anything that does not involve sticking yourself with a needle on a regular basis is to be applauded, I for one will be watching to see the level of side effects once it reaches a wider population. Because I take Cordyceps, from which it was developed, I tried unsucessfully to join one of the drug trials.
I shall be tracking and comparing reported side effects with those reported as a consequence of the Liberation Procedure.I shall try to keep my personal thoughts and emotions out of it.
Talking of emotional incontinence, I was reminded today by someone that it can be hard to deal with the exuberence of the successful for those who tried CCSVI treatent and got no benefit.Yes there are some out there. It can be hard to remember those less lucky when it feels like a miracle in your own life.
The guy in question is still an advocate of CCSVI via the CCSVI Alliance. Kudos to him, it must be difficult sometimes. The site offers some excellent information, so go visit.
Nuedexta as it is called was approved on 30th October , and the company, Avenir, expects it to be available by prescription first quarter 2011 in the USA. UK patients don't hold your breath.
Interestingly, if you Google for Nuedexta, the first item is "Avanir Pharma shares double on FDA drug approval".
Gilenya, the new oral disease modifying drug for MS, is also to be available on prescription shortly. Whilst anything that does not involve sticking yourself with a needle on a regular basis is to be applauded, I for one will be watching to see the level of side effects once it reaches a wider population. Because I take Cordyceps, from which it was developed, I tried unsucessfully to join one of the drug trials.
I shall be tracking and comparing reported side effects with those reported as a consequence of the Liberation Procedure.I shall try to keep my personal thoughts and emotions out of it.
Talking of emotional incontinence, I was reminded today by someone that it can be hard to deal with the exuberence of the successful for those who tried CCSVI treatent and got no benefit.Yes there are some out there. It can be hard to remember those less lucky when it feels like a miracle in your own life.
The guy in question is still an advocate of CCSVI via the CCSVI Alliance. Kudos to him, it must be difficult sometimes. The site offers some excellent information, so go visit.
Friday 5 November 2010
Odds and ends
A few things have been crossing my mind lately, that I thought I would like to share. Firstly, my older MS symptoms (intention tremor in my left hand, MS hug, weird optical effects when tired being the main ones) are still hanging around, although much less severe than before my procedure. Later ones have almost gone, noticeable only to those who know me well. This would sit well with the theory that the damage in my CNS is related to the venous circulation, as older damage is likely to be more profound and more difficult to recover from, but more recently affected areas would recover more quickly, following an improvement in that circulation.
The main symptom I have left is trigeminal and/or occipital neuralgia, for which I take carbamazepine. Compared to the cut my head off please severity of the pain I had even a few months ago, the pain is relatively mild and of short duration. Little is known about the causes of this horrendous condition, but interestingly many cases are related to an abnormality where the nerve comes out of the skull from the brain, or where a blood vessel presses on the nerve. I wonder if there is a structural relationship with CCSVI?
I am not, nor have I been, taking any of the disease modifying drugs. The nearest I have taken to an immune modulator is Cordyceps sinensis capsules. I took them primarily because they reduced my fatigue levels. For those familiar with the spoon theory of chronic disease, they gave me an extra spoon. Along with vitamins D and B12, that is my main supplement, although I'm finding it hard to maintain any motivation for taking supplements at the moment.
As I said in a previous post, I have two friends undergoing the procedure at the moment. Both were found to have significant (greater than 70%) blockage of the jugular and azygous veins. Regardless of any direct causal link with MS, this must reduce function in the brain and spinal chord. I am waiting to hear their results.
Finally, many people have remarked on the restoration of my personality since the operation. I had not been aware of it myself, but I suppose chronic pain and reduction in quality of life could have been responsible , but I am amazed how many say that I have my old self back. The scientific arguments continue, but we who have undergone this life-changing operation are its greatest argument for making it widely available.
The main symptom I have left is trigeminal and/or occipital neuralgia, for which I take carbamazepine. Compared to the cut my head off please severity of the pain I had even a few months ago, the pain is relatively mild and of short duration. Little is known about the causes of this horrendous condition, but interestingly many cases are related to an abnormality where the nerve comes out of the skull from the brain, or where a blood vessel presses on the nerve. I wonder if there is a structural relationship with CCSVI?
I am not, nor have I been, taking any of the disease modifying drugs. The nearest I have taken to an immune modulator is Cordyceps sinensis capsules. I took them primarily because they reduced my fatigue levels. For those familiar with the spoon theory of chronic disease, they gave me an extra spoon. Along with vitamins D and B12, that is my main supplement, although I'm finding it hard to maintain any motivation for taking supplements at the moment.
As I said in a previous post, I have two friends undergoing the procedure at the moment. Both were found to have significant (greater than 70%) blockage of the jugular and azygous veins. Regardless of any direct causal link with MS, this must reduce function in the brain and spinal chord. I am waiting to hear their results.
Finally, many people have remarked on the restoration of my personality since the operation. I had not been aware of it myself, but I suppose chronic pain and reduction in quality of life could have been responsible , but I am amazed how many say that I have my old self back. The scientific arguments continue, but we who have undergone this life-changing operation are its greatest argument for making it widely available.
Wednesday 3 November 2010
Awakenings
Does anyone remember the 1990 film Awakenings starring Robert DeNiro and Robin Williams? It was about a group of patients who were in a catatonic state after an epidemic infection, but who were revived after being given a new drug.
This film has been on my mind much recently, not just because I too feel like I have been reawakened to life, but because of the second half of the film, where the effects of the treatment start to wear off, and they return to their sleeping state. I suppose it is one of the risks of being an early patient, that you don't really know what is the likely long term outlook.
I have been asked by people ,who have seen my dramatic improvement, what is the prognosis, but I don't really know. The surgeon who did my procedure was delighted with the results he got, particularly on my right jugular, and said he didn't think I would re-stenose. But it is a risk.
So there is an edge to my delight in my relatively symptom free existence at the moment. Whereas before, on waking , I would do a body check to see what else had gone wrong today, what other joys the MonSter had in store for me, now I find myself on almost constant alert, looking for the merest hint that MS was getting the upper hand again and the effects of my treatment are beginning to wear off.
Meanwhile, I see people going off to try their luck with Liberation. As I write, two of my friends are in Bulgaria, and others are investigating the possibility for themselves.
And so the movie weighs heavily on my mind. Its tag line: There is no such thing as a simple miracle.
This film has been on my mind much recently, not just because I too feel like I have been reawakened to life, but because of the second half of the film, where the effects of the treatment start to wear off, and they return to their sleeping state. I suppose it is one of the risks of being an early patient, that you don't really know what is the likely long term outlook.
I have been asked by people ,who have seen my dramatic improvement, what is the prognosis, but I don't really know. The surgeon who did my procedure was delighted with the results he got, particularly on my right jugular, and said he didn't think I would re-stenose. But it is a risk.
So there is an edge to my delight in my relatively symptom free existence at the moment. Whereas before, on waking , I would do a body check to see what else had gone wrong today, what other joys the MonSter had in store for me, now I find myself on almost constant alert, looking for the merest hint that MS was getting the upper hand again and the effects of my treatment are beginning to wear off.
Meanwhile, I see people going off to try their luck with Liberation. As I write, two of my friends are in Bulgaria, and others are investigating the possibility for themselves.
And so the movie weighs heavily on my mind. Its tag line: There is no such thing as a simple miracle.
Monday 1 November 2010
CCSVI - the debate continues
I have had the procedure and got good results, so it doesn't take much working out which side of the CCSVI debate I'm on. But that doesn't stop me reading and listening to everything both sides have to say. Most of the time the discussion is fairly rational, if a little heated on occasion.
Any new theory, whether or not it proves to be found true in the longer term, is expected to be greeted with a little healthy scepticism in the beginning. Equally those in favour can be quite disparaging of those unwilling to embrace the new concept. As an MS patient it can be distressing to see this, not knowing for sure which side is correct.
It is therefore doubly distressing when when highly emotive language is used. Describing supporters of the theory as acolytes and pilgrims and Dr Zamboni's findings as a figment of the imagination does nothing to further rational debate on the issue. Accusing all naysayers of being in the pockets of the large drug companies also blinds many potential supporters and makes them harden their position.
Recent small sample studies in Holland using MRV rather than Doppler ultrasound have failed to confirm Dr Zamboni's findings. Is this due to differences in technique, the sample size used or a genuine refutation of the theory?
I don't know.
Nor do I know how much the anecdotal reports of MS patients and the declared results of the large number of centres around the world offering angioplasty support the theory.
All I know for sure is that I had the operation and my symptoms reduced dramatically almost immediately afterwards.
Ignaz Semmelweis in 1847 demonstrated that "childbed fever" could be dramtically reduced by the simple introduction of hand washing by medical staff between patients. He lectured and published books, but the reception by the medical community was somewhat hostile. It was not until after his death in 1865, ironically of blood poisoning, that his work was finally vindicated. He is now recognised as a pioneer or the use of antiseptics to control infection.
The link between hand washing and reduction in deaths in the maternity units took nearly 20 years to be made. Some of us don't have 20 years to wait.
Any new theory, whether or not it proves to be found true in the longer term, is expected to be greeted with a little healthy scepticism in the beginning. Equally those in favour can be quite disparaging of those unwilling to embrace the new concept. As an MS patient it can be distressing to see this, not knowing for sure which side is correct.
It is therefore doubly distressing when when highly emotive language is used. Describing supporters of the theory as acolytes and pilgrims and Dr Zamboni's findings as a figment of the imagination does nothing to further rational debate on the issue. Accusing all naysayers of being in the pockets of the large drug companies also blinds many potential supporters and makes them harden their position.
Recent small sample studies in Holland using MRV rather than Doppler ultrasound have failed to confirm Dr Zamboni's findings. Is this due to differences in technique, the sample size used or a genuine refutation of the theory?
I don't know.
Nor do I know how much the anecdotal reports of MS patients and the declared results of the large number of centres around the world offering angioplasty support the theory.
All I know for sure is that I had the operation and my symptoms reduced dramatically almost immediately afterwards.
Ignaz Semmelweis in 1847 demonstrated that "childbed fever" could be dramtically reduced by the simple introduction of hand washing by medical staff between patients. He lectured and published books, but the reception by the medical community was somewhat hostile. It was not until after his death in 1865, ironically of blood poisoning, that his work was finally vindicated. He is now recognised as a pioneer or the use of antiseptics to control infection.
The link between hand washing and reduction in deaths in the maternity units took nearly 20 years to be made. Some of us don't have 20 years to wait.
Saturday 30 October 2010
Tracking results
There is a huge amount of data floating around the web about the effectiveness or otherwise of the CCSVI treatment on MS patients. I know that prior to my own operation, I found it difficult to work out what to believe. Videos and comments, both for and against, abound. That was why I started this blog, but I guess for some of you reading this, my thoughts are also part of the clouds of information. Who or what do I believe?
That is why I was delighted to come across the site CCSVI tracking. It hopes to build up a picture by collating data from people who have had the procedure done around the world and tracking what happens to them over time. Is there an improvement in symptoms? Does it last? If so, how long? This should begin to answer the burning questions.
So it is important that as many people as possible who have had ,or are going to have the procedure shortly , take part. Negative and positive results are all important in creating as accurate a picture as possible. It will require an ongoing commitment of about 15 minutes per month. Please find the time.
Because we are all worth it.
That is why I was delighted to come across the site CCSVI tracking. It hopes to build up a picture by collating data from people who have had the procedure done around the world and tracking what happens to them over time. Is there an improvement in symptoms? Does it last? If so, how long? This should begin to answer the burning questions.
So it is important that as many people as possible who have had ,or are going to have the procedure shortly , take part. Negative and positive results are all important in creating as accurate a picture as possible. It will require an ongoing commitment of about 15 minutes per month. Please find the time.
Because we are all worth it.
Friday 29 October 2010
Don't try to do too much
Is there anyone out there who listens to the advice they are given? Especially the advice they give themselves? Having been ill for a long time, and had an operation just a month ago, I really should have been building up my activity levels gradually. So far I've been careful to split my daily walks into chunks, listening to my body and stopping before I got too tired. But I've been feeling so good,and it has been so great to go back to work, that I haven't been pacing myself as I should. I started back at two afternoons per week and that was fine. I was coping well, and adding a extra afternoons was going OK. Hey, Ma, look at me, top o' the world.
Then things got really busy. Instead of continuing to pace myself, and wanting to feel useful again, I kept going. I was enjoying being part of a team again, rather than living the isolation that MS imposed. What's a few more hours?
So today, after nearly two and a half full days at work,without a day off in between, my body called time. Heck, I've had too long of not being able to do anything, that the concept of doing too much is actually pleasurable.
It is good to be normally tired again. No cog fog, no going virtually comatose. MS exhaustion is so different from that experienced by just over doing it. I will sleep like a log tonight. But I will wake up rested and refreshed. It is a long time since I could say that.
Then things got really busy. Instead of continuing to pace myself, and wanting to feel useful again, I kept going. I was enjoying being part of a team again, rather than living the isolation that MS imposed. What's a few more hours?
So today, after nearly two and a half full days at work,without a day off in between, my body called time. Heck, I've had too long of not being able to do anything, that the concept of doing too much is actually pleasurable.
It is good to be normally tired again. No cog fog, no going virtually comatose. MS exhaustion is so different from that experienced by just over doing it. I will sleep like a log tonight. But I will wake up rested and refreshed. It is a long time since I could say that.
Wednesday 27 October 2010
Sue has her mojo back
This is something that can be skimmed over in "living with MS" guides, but is a very real issue for those of us with MS, and their partners. Apart from the psycological problems associated with living with a chronic progressive incurable disease, and the practical ones associated with poor bladder and bowel control, fatigue and spasticity, loss of sexual function in itself is often glossed over.
Numbness and loss of sensation below the waist means just that. No amount of lubrication and extra stimulation will help if the messages just aren't getting through. Loss of physical intimacy in a relationship is one more thing to chalk up to the MonSter.
As the sedation wore off after my operation, Robin stroked my feet, and I was able to feel his touch for the first time in a long time. He continued, touching my ankles and calves, joking that further exploration should be left for another time.
Five weeks after my operation, I am pleased to announce that full sensation has returned.
Sue has got her mojo back.
Numbness and loss of sensation below the waist means just that. No amount of lubrication and extra stimulation will help if the messages just aren't getting through. Loss of physical intimacy in a relationship is one more thing to chalk up to the MonSter.
As the sedation wore off after my operation, Robin stroked my feet, and I was able to feel his touch for the first time in a long time. He continued, touching my ankles and calves, joking that further exploration should be left for another time.
Five weeks after my operation, I am pleased to announce that full sensation has returned.
Sue has got her mojo back.
Tuesday 26 October 2010
Kuwaiti experience
For those of you would like to find out a bit more about CCSVI around the world, this is a YouTube video of a presentation by Dr Tariq Sinan. Some of it is quite technical, but it is worth persevering.
Many MS patients will empathise with the patient in the video. Dr Sinan shows many examples he has found in his practice.
For those still unsure about CCSVI, Newton may not have made his declaration, but apples are still falling downwards.
Kuwaiti experience
Many MS patients will empathise with the patient in the video. Dr Sinan shows many examples he has found in his practice.
For those still unsure about CCSVI, Newton may not have made his declaration, but apples are still falling downwards.
Kuwaiti experience
Oliver Heaviside, my hero.
No, this is not going to be a long and convoluted discussion about mathematics. I just came across a wonderful quotation which applies very much to the current situation with CCSVI.
While neurologists seem to be trapped in some form of groupthink that stops them from looking at this as an opportunity, and vascular specialists are working on making the procedure safe and routine, the link between CCSVI and MS remains unproven. But as more and more of us have the operation and see benefits, the pressure to make it widely available increases.
And so the quotation. "I do not refuse my dinner simply because I do not understand the process of digestion."
I opted to have my dinner too, how about you?
While neurologists seem to be trapped in some form of groupthink that stops them from looking at this as an opportunity, and vascular specialists are working on making the procedure safe and routine, the link between CCSVI and MS remains unproven. But as more and more of us have the operation and see benefits, the pressure to make it widely available increases.
And so the quotation. "I do not refuse my dinner simply because I do not understand the process of digestion."
I opted to have my dinner too, how about you?
Sunday 24 October 2010
Poland Treatment centres under threat
Sometimes something arises which challenges the medical orthodoxy, and the proponents are ridiculed and excluded. This has happened with everything from vaccination, through bacterial infection, anaethesia to the link between stomach ulcers and a bacterium. Don't let this happen with CCSVI.
Please read the conversation on This is MS, and if you can, send an email in support.
"A neurologist, Dr. Danuta Ryglewicz, and the director of the medical association of Poland have contacted the ministry of health in an attempt to shut down CCSVI treatment in Poland. Please write e-mails to ryglew@ipin.edu.pl and prezes@hipokrates.org and ask them to stop their attempts and state why the CCSVI treatment is needed. Or, if you're already treated, tell them your experience. Please send me a blind copy of your mail to wiercin@gmail.com, so I can collect them and use them to confront both with them."
Thank you
Please read the conversation on This is MS, and if you can, send an email in support.
"A neurologist, Dr. Danuta Ryglewicz, and the director of the medical association of Poland have contacted the ministry of health in an attempt to shut down CCSVI treatment in Poland. Please write e-mails to ryglew@ipin.edu.pl and prezes@hipokrates.org and ask them to stop their attempts and state why the CCSVI treatment is needed. Or, if you're already treated, tell them your experience. Please send me a blind copy of your mail to wiercin@gmail.com, so I can collect them and use them to confront both with them."
Thank you
Thursday 21 October 2010
One month on
Yesterday was four weeks on from my angioplasty, so I thought I'd do a quick summary of my status, remembering that prior to the operation I was EDSS 5.5, heading for 6, and giving up work.
I think this covers everything. A lot has changed since September 22nd! Let's hope it keeps up.
- My head is still clear and MS fatigue has gone. No longer take modafinil to get through the day.
- I have started to return to work part time, gradually increasing my hours as my body gets used to the increased level of activity.
- Walking without a stick. Can now manage 3.5 kilometres with rest stops
- Walking speed near normal. I can now pretty well keep up with Robin.
- Gait near normal. Described as looking like someone recovering from a strain or sprain or similar injury
- Occasional visits from the MS hug, but of less severity and shorter duration than before. Also confined to lower ribcage, whereas previously would spread up ribs to lower neck, affecting swallowing.
- Bladder stable. Tolteridone stopped. Can actually wait a few minutes before going to the loo when I get the urge.
- Still taking carbamazepine for trigeminal neuralgia, dose as before, but timing no longer as critical. Taking my tablets a little late does not immediately trigger an attack. Cold on my neck still does though, scarves keep things under control. Constant level of background pain has gone.
- Still taking citalopram for mood control. Not just depression, but all emotions on a fine trigger without it, eg get irritated and snappy at the slightest thing.
- Sleeping erratically, insomnia getting to be an issue. Perhaps making up for all those days I slept for 18-20 hours.
- Vivid dreams
- Warm feet
Wednesday 20 October 2010
Cerebral hypoperfusion linked to white matter lesions in the elderly.
When I had my first MRI, prior to my diagnosis, my neuro talked about the lesions and how you can get them with increasing age. They appear in the white matter. It is a condition known as leukoariosis (LA), which is a major cause of vascular dementia and disability in the elderly.
A taiwanese doctor, Dr Chung, has been carrying out research into the relationship between the jugular veins and transient global anmesia (TGA) and other neurological disorders. He has recently published two papers into aging and the jugular veins.
http://www.ncbi.nlm.nih.gov/pubmed/20800950
http://www.biomedsearch.com/nih/Pathogenesis-leukoaraiosis-Role-jugular-venous/20172657.html
The etiology is so far unclear. Chronic cerebral hypoperfusion associated with vasogenic edema, microbleeding or/and endothelial dysfunction found in LA favors venous ischemia, instead of arterial ischemia, as its pathogenesis. The involved regions in LA, periventricular and subcortical regions, are the drainage territory of deep cerebral venous system and the watershed region between the superficial and deep cerebral venous system respectively. Adding the facts that periventricular venule collagenosis, and retinal and intraparenchymal venules dilatation are related to the severity of LA, cerebral venous hypertension caused by downstream venous outflow impairment might play a major role in the pathogenesis of LA. Internal jugular vein is the main venous outflow pathway for cerebral venous drainage. The frequency of jugular venous reflux (JVR) is increased with aging. Hypertension, which has a decreased venous distensibility, might further exacerbate the sustained or long-term repetitive retrograde-transmitted cerebral venous pressure and venous outflow insufficiency caused by JVR. Clinically, JVR caused by a dural AV fistula does lead to cerebral hypoperfusion, white matter abnormalities, vasogenic edema and cognitive impairment in several published reports. JVR is suggested to play a key role in the pathogenesis of LA through a sustained or long-term repetitive retrograde-transmitted cerebral venous pressure and venous outflow insufficiency, which might lead to chronic cerebral venous hypertensions, abnormal cerebral venules structural changes, decreased cerebral blood flow, endothelial dysfunction, and vasogenic edema in cerebral white matters.
Dr Chung is postulating that slowed venous flow in the left jugular, more reflux and less drainage is the cause of these white matter lesions in the brain. While this is not CCSVI, nor is it MS, there is evidence out there that conditions thought of as neurological have in fact a vascular cause.
A taiwanese doctor, Dr Chung, has been carrying out research into the relationship between the jugular veins and transient global anmesia (TGA) and other neurological disorders. He has recently published two papers into aging and the jugular veins.
http://www.ncbi.nlm.nih.gov/pubmed/20800950
http://www.biomedsearch.com/nih/Pathogenesis-leukoaraiosis-Role-jugular-venous/20172657.html
The etiology is so far unclear. Chronic cerebral hypoperfusion associated with vasogenic edema, microbleeding or/and endothelial dysfunction found in LA favors venous ischemia, instead of arterial ischemia, as its pathogenesis. The involved regions in LA, periventricular and subcortical regions, are the drainage territory of deep cerebral venous system and the watershed region between the superficial and deep cerebral venous system respectively. Adding the facts that periventricular venule collagenosis, and retinal and intraparenchymal venules dilatation are related to the severity of LA, cerebral venous hypertension caused by downstream venous outflow impairment might play a major role in the pathogenesis of LA. Internal jugular vein is the main venous outflow pathway for cerebral venous drainage. The frequency of jugular venous reflux (JVR) is increased with aging. Hypertension, which has a decreased venous distensibility, might further exacerbate the sustained or long-term repetitive retrograde-transmitted cerebral venous pressure and venous outflow insufficiency caused by JVR. Clinically, JVR caused by a dural AV fistula does lead to cerebral hypoperfusion, white matter abnormalities, vasogenic edema and cognitive impairment in several published reports. JVR is suggested to play a key role in the pathogenesis of LA through a sustained or long-term repetitive retrograde-transmitted cerebral venous pressure and venous outflow insufficiency, which might lead to chronic cerebral venous hypertensions, abnormal cerebral venules structural changes, decreased cerebral blood flow, endothelial dysfunction, and vasogenic edema in cerebral white matters.
Dr Chung is postulating that slowed venous flow in the left jugular, more reflux and less drainage is the cause of these white matter lesions in the brain. While this is not CCSVI, nor is it MS, there is evidence out there that conditions thought of as neurological have in fact a vascular cause.
Tuesday 19 October 2010
CCSVI -The biological plausability of the concept
An extract from an article published in the Canadian Journal of Neurological Sciences
Multiple Sclerosis - A Vascular Etiology?
Bryce Weir A1
A1 Department of Surgery, University of Chicago, Illinois, USA
Abstract:
From the earliest pathological studies the perivenular localization of the demyelination in multiple sclerosis (MS) has been observed. It has recently been suggested that obstructions to venous flow or inadequate venous valves in the great veins in the neck, thorax and abdomen can cause damaging back flow into the cerebral and spinal cord circulations. Paolo Zamboni and colleagues have demonstrated abnormal venous circulation in some multiple sclerosis patients using non-invasive sonography and invasive venography. Furthermore, they have obtained apparent clinical improvement or stabilization by endovascular ballooning of points of obstruction in the great veins in some, at least temporarily. If non-invasive observations by others validate their initial observations of a significantly increased prevalence of venous obstructions in MS then trials of angioplasty/stenting would be justified in selected cases in view of the biological plausibility of the concept.
http://cjns.metapress.com/app/home/contribution.asp?referrer=parent&backto=issue%2C10%2C43%3Bjournal%2C1%2C76%3Blinkingpublicationresults%2C1%3A300307%2C1
Here is Dr. Weir's bio-
BRYCE WEIR was born in Edinburgh, Scotland, on April 29, 1936. He grew up in Montreal. At McGill University attended the Faculty of Medicine, from which he was graduated in 1960. He is currently Professor Emeritus at the University of Alberta and The University of Chicago.
He practiced neurosurgery at the University of Alberta for 25 years, becoming Director of the Division of Neurosurgery and subsequently Chairman and Walter Stirling Anderson Professor of the Department of Surgery and Surgeon-in-Chief at the University of Alberta Hospitals. Dr. Weir was president of the Canadian Neurosurgical Society, the Canadian Congress of Neurological Sciences, the Canadian Stroke Society, and the Alberta Medical Association.
In July, 1992, he moved to the United States and was appointed the Maurice Goldblatt Professor in Surgery and Neurology and Chief of Neurosurgery at the University of Chicago. He assumed the Directorship of the Brain Research Institute the following year. Prior to retirement, he was Interim Dean of the Biological Sciences Division and the Pritzker School of Medicine, and Vice-President for Medical Affairs at The University of Chicago, 2001-2002. He was elected to membership of the National Academy of Sciences in 1997.
Multiple Sclerosis - A Vascular Etiology?
Bryce Weir A1
A1 Department of Surgery, University of Chicago, Illinois, USA
Abstract:
From the earliest pathological studies the perivenular localization of the demyelination in multiple sclerosis (MS) has been observed. It has recently been suggested that obstructions to venous flow or inadequate venous valves in the great veins in the neck, thorax and abdomen can cause damaging back flow into the cerebral and spinal cord circulations. Paolo Zamboni and colleagues have demonstrated abnormal venous circulation in some multiple sclerosis patients using non-invasive sonography and invasive venography. Furthermore, they have obtained apparent clinical improvement or stabilization by endovascular ballooning of points of obstruction in the great veins in some, at least temporarily. If non-invasive observations by others validate their initial observations of a significantly increased prevalence of venous obstructions in MS then trials of angioplasty/stenting would be justified in selected cases in view of the biological plausibility of the concept.
http://cjns.metapress.com/app/home/contribution.asp?referrer=parent&backto=issue%2C10%2C43%3Bjournal%2C1%2C76%3Blinkingpublicationresults%2C1%3A300307%2C1
Here is Dr. Weir's bio-
BRYCE WEIR was born in Edinburgh, Scotland, on April 29, 1936. He grew up in Montreal. At McGill University attended the Faculty of Medicine, from which he was graduated in 1960. He is currently Professor Emeritus at the University of Alberta and The University of Chicago.
He practiced neurosurgery at the University of Alberta for 25 years, becoming Director of the Division of Neurosurgery and subsequently Chairman and Walter Stirling Anderson Professor of the Department of Surgery and Surgeon-in-Chief at the University of Alberta Hospitals. Dr. Weir was president of the Canadian Neurosurgical Society, the Canadian Congress of Neurological Sciences, the Canadian Stroke Society, and the Alberta Medical Association.
In July, 1992, he moved to the United States and was appointed the Maurice Goldblatt Professor in Surgery and Neurology and Chief of Neurosurgery at the University of Chicago. He assumed the Directorship of the Brain Research Institute the following year. Prior to retirement, he was Interim Dean of the Biological Sciences Division and the Pritzker School of Medicine, and Vice-President for Medical Affairs at The University of Chicago, 2001-2002. He was elected to membership of the National Academy of Sciences in 1997.
Bladder and bowel control , the last taboo.
One of the greatest improvements in my quality of life since my operation has been the restoration of bladder control. No matter how effective the medication you use, or absorbent the pads that get you through the day (and night), it is fundamentally distressing to lose the control you acquired as a very young child.
In this day and age, talking about just about anything else is acceptable; Viagra adverts hit just about every email inbox; condoms are openly for sale by the till in the supermarket, but still we avoid discussing leaking bladders and bowels. Perhaps this will also change - at least continence pads have come out from behind the counter in the pharmacy and onto open display.
Yet put a group of people with MS together and eventually conversation will drift round to this topic. Various medications are discussed, along with their various side effects; the blessed relief many experience when they go to self-catheterisation; absorbency of differing brands of pads are debated, along with strategies on how to cope when "caught out" away from home. Because of the cultural taboos, many recently diagnosed feel somehow a failure when they first experience loss of control.
But they are not alone. This is one of the commonest and in many ways the most distressing effects of this sometimes literally shitty disease. Within that self-same group of MS patients, conversation gives way to laughter as different members top each others tales of public embarrassment.
Still, it has a deep and lasting effect on a person's quality of life. Travel and social activities may be curtailed. It may not be practical to work any longer. While some jobs and workplaces can be adapted, this is not always possible. From the check-out operator to the barrister in court, sudden departure is not really an option.
So, yes, my greatest benefit has not been in walking, but in regaining that which as adults we take so much for granted, control over my bladder once more.
In this day and age, talking about just about anything else is acceptable; Viagra adverts hit just about every email inbox; condoms are openly for sale by the till in the supermarket, but still we avoid discussing leaking bladders and bowels. Perhaps this will also change - at least continence pads have come out from behind the counter in the pharmacy and onto open display.
Yet put a group of people with MS together and eventually conversation will drift round to this topic. Various medications are discussed, along with their various side effects; the blessed relief many experience when they go to self-catheterisation; absorbency of differing brands of pads are debated, along with strategies on how to cope when "caught out" away from home. Because of the cultural taboos, many recently diagnosed feel somehow a failure when they first experience loss of control.
But they are not alone. This is one of the commonest and in many ways the most distressing effects of this sometimes literally shitty disease. Within that self-same group of MS patients, conversation gives way to laughter as different members top each others tales of public embarrassment.
Still, it has a deep and lasting effect on a person's quality of life. Travel and social activities may be curtailed. It may not be practical to work any longer. While some jobs and workplaces can be adapted, this is not always possible. From the check-out operator to the barrister in court, sudden departure is not really an option.
So, yes, my greatest benefit has not been in walking, but in regaining that which as adults we take so much for granted, control over my bladder once more.
Thursday 14 October 2010
The 33
Like many people around the world I have been fascinated by the story of the 33 men trapped underground in a mine in Chile and their eventual rescue after 69 days. I will admit to watching as each were lifted out using that scary looking but very effective cage they called the Phoenix. As did many others, I cheered as the last miner, Luis Urzua, appeared.
I also applauded as the last of the rescuers who had gone down to help them, Manuel Gonzalez, turned to the web cam in the underground chamber, bowed and waved in triumph before making his own way to the surface, some two and a half hours later.
Remarkable men all of them.
Much was made of how their survival for such a long time, including the 17 days before any contact with the outside world was made, was down to the way that they were organised into working for their own escape, preparing for the day that some rescue would come.
Their situation also made me think about MS. We too live with uncertainty, as did the men below ground. But doing something that gives us back some sense of control of our own fate, whether it be diet, exercise, CCSVI treatment, disease modifying drugs, or one of the many 'alternative' therapies, helps us prepare for the day when our cure will come, and to survive the interim.
Meanwhile our rescuers are working to come up with a solution. Just as at the mine, where there were three separate plans underway to get them out, there are several avenues being investigated. Just because Plan B was the one that got the miners out, does not mean that the workers on the other two should not be thanked for the effort they put in. So we have researchers looking at different ways to liberate us from the tyranny of MS. At this stage, we do not know for certain which route will turn out the best.
We live in interesting times.
Let us spare a thought for the thousands who die in mining accidents. The Geneva based ICEM estimates 12000 per year, although the actual figure may be higher. As with MS, there are no reliable global statistics.
But this story at least had a happy ending. The sister-in-law of oldest miner Mario Gomez, Belgica Ramirez, told Agence France-Presse: "It's a new life about to begin."
I also applauded as the last of the rescuers who had gone down to help them, Manuel Gonzalez, turned to the web cam in the underground chamber, bowed and waved in triumph before making his own way to the surface, some two and a half hours later.
Remarkable men all of them.
Much was made of how their survival for such a long time, including the 17 days before any contact with the outside world was made, was down to the way that they were organised into working for their own escape, preparing for the day that some rescue would come.
Their situation also made me think about MS. We too live with uncertainty, as did the men below ground. But doing something that gives us back some sense of control of our own fate, whether it be diet, exercise, CCSVI treatment, disease modifying drugs, or one of the many 'alternative' therapies, helps us prepare for the day when our cure will come, and to survive the interim.
Meanwhile our rescuers are working to come up with a solution. Just as at the mine, where there were three separate plans underway to get them out, there are several avenues being investigated. Just because Plan B was the one that got the miners out, does not mean that the workers on the other two should not be thanked for the effort they put in. So we have researchers looking at different ways to liberate us from the tyranny of MS. At this stage, we do not know for certain which route will turn out the best.
We live in interesting times.
Let us spare a thought for the thousands who die in mining accidents. The Geneva based ICEM estimates 12000 per year, although the actual figure may be higher. As with MS, there are no reliable global statistics.
But this story at least had a happy ending. The sister-in-law of oldest miner Mario Gomez, Belgica Ramirez, told Agence France-Presse: "It's a new life about to begin."
Monday 11 October 2010
Saw my GP today
Strange to say, but it was really good to see my GP today. She has seen me since my MS was a bunch of strange, unexplained happenings, and at least this time I was not worse than the visit before. Indeed I looked brighter, sounded better and walked without the aid of a stick for the first time in a long time.
It is hard to continue to be hard headed and rational about all this, when it has made such a difference to my life. Each day I am walking a little further, and although my gait is not perfect, at least I am master of my own destiny again.
Some of the people I know have not been so lucky. A couple have had the blockage in the veins come back (re-stenosis) and a couple have had such complicated problems that standard angioplasty, even with stents, has not been able to resolve their circulation.
It also depends on how long and how aggressive the MS has been. If a lot of damage to the brain and spinal cord has occured, and there is a lot of pre-existing scar tissue, then it is unlikely that this can be recovered from. Although some stroke patients can recover quite a lot of function, despite large areas of the brain being affected, the damage is recent. But with aggressive physiotherapy and rehabilitation, who knows what can happen? That is for other lab rats to determine. For this one, the fundamental theory works.
I continue to read up everything I can on the connection between MS and the vascular system. Links to interesting stuff are in the pages attatched to this blog.
It is hard to continue to be hard headed and rational about all this, when it has made such a difference to my life. Each day I am walking a little further, and although my gait is not perfect, at least I am master of my own destiny again.
Some of the people I know have not been so lucky. A couple have had the blockage in the veins come back (re-stenosis) and a couple have had such complicated problems that standard angioplasty, even with stents, has not been able to resolve their circulation.
It also depends on how long and how aggressive the MS has been. If a lot of damage to the brain and spinal cord has occured, and there is a lot of pre-existing scar tissue, then it is unlikely that this can be recovered from. Although some stroke patients can recover quite a lot of function, despite large areas of the brain being affected, the damage is recent. But with aggressive physiotherapy and rehabilitation, who knows what can happen? That is for other lab rats to determine. For this one, the fundamental theory works.
I continue to read up everything I can on the connection between MS and the vascular system. Links to interesting stuff are in the pages attatched to this blog.
Saturday 9 October 2010
To sleep, perchance to dream
This is a strange thing, and comes into the category of you don't know it was gone until it comes back, but I've started dreaming again.
Pre-treatment I slept heavily, and crashed for a couple of hours a day minimum, but I have no memory of any dreams. This may be because I slept so deeply that I could not be woken during the dream phase of sleep, and now I can. Or it could be a partial explanation for the cog fog. I was not sleeping properly, dreaming and so processing the input to my brain.
"REM sleep time is strongly reduced by hypoxic and increased by hyperoxic atmosphere, in accordance with the existence of an O2 diffusion limitation. Any pathological decrease in arterial PO2 and/or O2 delivery creates a specific risk in REM sleep."
http://www.ncbi.nlm.nih.gov/pubmed/11382905
Durring REM sleep, there is an increase in blood flow to the limbic system and the brain stem, with circulation to these structures decreasing during non-REM sleep. As brain activity increases during REM sleep, the cerebral requirements for glucose and oxygen both increase....
Fundamentals of Sleep Technology--Butkov, Lee-Choing 2007
I would be interested to hear your experience. Do you dream?
Pre-treatment I slept heavily, and crashed for a couple of hours a day minimum, but I have no memory of any dreams. This may be because I slept so deeply that I could not be woken during the dream phase of sleep, and now I can. Or it could be a partial explanation for the cog fog. I was not sleeping properly, dreaming and so processing the input to my brain.
"REM sleep time is strongly reduced by hypoxic and increased by hyperoxic atmosphere, in accordance with the existence of an O2 diffusion limitation. Any pathological decrease in arterial PO2 and/or O2 delivery creates a specific risk in REM sleep."
http://www.ncbi.nlm.nih.gov/pubmed/11382905
Durring REM sleep, there is an increase in blood flow to the limbic system and the brain stem, with circulation to these structures decreasing during non-REM sleep. As brain activity increases during REM sleep, the cerebral requirements for glucose and oxygen both increase....
Fundamentals of Sleep Technology--Butkov, Lee-Choing 2007
Thursday 7 October 2010
I guess I've still got those holes in my brain.
So it was a nice morning and I decided to go for a walk on my own for the first time. Autumn is my favourite time of year, when the leaves on the trees are turning. I tried to be sensible, taking my mobile phone and a back pack with some money, something to drink and my bunch of keys. I thought of taking a fold-up cane just in case, but no, plan for success. There are plenty of places to stop on my planned route, if I need to rest.
Off I went, down our road towards the town, through the avenue of horse chestnut trees,pausing to collect a few conkers on the way, revelling in my ability to bend down and pick them up for myself. I love conkers, their deep glossy brown contrasting with the pale cream area. A few in my coat pocket would serve as momentos of my first solo adventure.
Having stopped to buy a newspaper, I turned for home, uphill this time. Part way up I stopped for a rest on a bench, sharing my refuge with an old man walking down the hill. We also shared a conspiratorial grin - no one else need know we had not stopped just to enjoy the scene, but we both knew the truth; sometimes you just have to stop.
So eventually I made my way to the house, pride in having done it on my own. I reached into my rucksack and pulled out my bunch of keys, only to finally remember the fact that had disappeared into my brain holes til then. Before we went away, we gave a neighbour my front door key, so that he could keep an eye on the place for us. In all the excitement of my treatment, we had never got it back
I was locked out,it was lunchtime and neither Robin nor our neighbour would be home until evening.
After sitting on the doorstep for a while, reading my newspaper and having a drink, contemplating what to do, I remembered the town library. Somewhere warm and comfortable I could spend the afternoon and while away the time browsing the books. I rang Robin at work and left him a message to pick me up from there when he finished.
So my solo walk was a little longer than planned, as I made my way back down the hill again to town. But I made it to the library with only one rest stop, something truly unthinkable just a few short weeks ago. I am set free.
Having stopped to buy a newspaper, I turned for home, uphill this time. Part way up I stopped for a rest on a bench, sharing my refuge with an old man walking down the hill. We also shared a conspiratorial grin - no one else need know we had not stopped just to enjoy the scene, but we both knew the truth; sometimes you just have to stop.
So eventually I made my way to the house, pride in having done it on my own. I reached into my rucksack and pulled out my bunch of keys, only to finally remember the fact that had disappeared into my brain holes til then. Before we went away, we gave a neighbour my front door key, so that he could keep an eye on the place for us. In all the excitement of my treatment, we had never got it back
I was locked out,it was lunchtime and neither Robin nor our neighbour would be home until evening.
After sitting on the doorstep for a while, reading my newspaper and having a drink, contemplating what to do, I remembered the town library. Somewhere warm and comfortable I could spend the afternoon and while away the time browsing the books. I rang Robin at work and left him a message to pick me up from there when he finished.
So my solo walk was a little longer than planned, as I made my way back down the hill again to town. But I made it to the library with only one rest stop, something truly unthinkable just a few short weeks ago. I am set free.
Monday 4 October 2010
What can I do in the meantime?
I know not everyone can get the treatment straight away, so what can you do to keep your circulation as healthy as possible in the meantime?
First of all, if you smoke, stop now.
As well as all the other lung problems smoking causes, nicotine narrows the blood vessels. If you have narrowed neck veins already, that's the last thing you want to do. So stop smoking now.
Eat a healthy diet.
A low-fat, low salt, nothing in excess diet will stop clogging your blood vessels with cholesterol and lower your blood pressure. Getting and or/keeping your weight at a healthy level (and don't forget too low is as bad as too high). Look on the heart health sites for a good place to start. If find it helps , many MS support groups have sub-groups following the Swank or Best Bet diets.
Exercise.
I know that heat sensitivity and limited mobility/ balance problems can make it difficult to work your body. But there are options. The UK MS Trust has a useful DVD and on-line exercise programme .
There are also several other on-line exercise and physiotherapy sites. If necessary discuss what is the best programme for you with your medical advisors.
If you have access to it, hyperbaric oxygen therapy (HBO) may also help your brain and spinal chord tissues well oxygenated. It worked for me. CCSVI may well help explain why some MS patients have recorded benefits from this therapy.
Certain supplements are also thought to help keep someone with MS as healthy as possible. Vitamin D and calcium are worthwhile, as more research is indicating a wider role for vitamin D than peviously thought. A number of others may again help, so research and find what works for you and your budget.
There are a lot of complementary and alternative therapies out there, and lots of information both good and bad. A good place to start looking is the Rocky Mountain Centre. I don't advocate any, but if it makes you feel better and you can afford it, go for it. Just remember, if it sounds too good to be true,it may well be.
First of all, if you smoke, stop now.
As well as all the other lung problems smoking causes, nicotine narrows the blood vessels. If you have narrowed neck veins already, that's the last thing you want to do. So stop smoking now.
Eat a healthy diet.
A low-fat, low salt, nothing in excess diet will stop clogging your blood vessels with cholesterol and lower your blood pressure. Getting and or/keeping your weight at a healthy level (and don't forget too low is as bad as too high). Look on the heart health sites for a good place to start. If find it helps , many MS support groups have sub-groups following the Swank or Best Bet diets.
Exercise.
I know that heat sensitivity and limited mobility/ balance problems can make it difficult to work your body. But there are options. The UK MS Trust has a useful DVD and on-line exercise programme .
There are also several other on-line exercise and physiotherapy sites. If necessary discuss what is the best programme for you with your medical advisors.
If you have access to it, hyperbaric oxygen therapy (HBO) may also help your brain and spinal chord tissues well oxygenated. It worked for me. CCSVI may well help explain why some MS patients have recorded benefits from this therapy.
Certain supplements are also thought to help keep someone with MS as healthy as possible. Vitamin D and calcium are worthwhile, as more research is indicating a wider role for vitamin D than peviously thought. A number of others may again help, so research and find what works for you and your budget.
There are a lot of complementary and alternative therapies out there, and lots of information both good and bad. A good place to start looking is the Rocky Mountain Centre. I don't advocate any, but if it makes you feel better and you can afford it, go for it. Just remember, if it sounds too good to be true,it may well be.
Daily victories
I don't know how long it is before it is considered a real and not a placebo effect. 10 days on and my head is still clear and I stand and walk as well as I did two years ago. The daily slide into incapacity has halted.
Prior to MS fogging up my brain I used to love cooking, especially baking. Recently my repertoire was limited to packet mixes - even following a recipe was too complex, causing that horrible 'overload' where I ended up not only confused by the recipe, but totally unable to function. Only bread remained within my limits.
Today I made a flour less chocolate cake, following a recipe. It is these little victories that mean as much as the big ones.
I have a vibration trainer that I have been using to try and keep my muscles in tone. Prior to my operation, I also used it to help control my neuralgia. If I was getting a peak attack and caught it early enough, 5 minutes vibrating my neck and shoulders often nipped the attack in the bud. I'm now using it to help build back up the muscles in my lower body. As it doesn't make me overheat, I find this the best way at the moment.
My other big plus is that my bladder control has improved. This may be because I have sensation back in my lower body, I don't now.
Over all I feel very positive. I just want it to stay that way.
Prior to MS fogging up my brain I used to love cooking, especially baking. Recently my repertoire was limited to packet mixes - even following a recipe was too complex, causing that horrible 'overload' where I ended up not only confused by the recipe, but totally unable to function. Only bread remained within my limits.
Today I made a flour less chocolate cake, following a recipe. It is these little victories that mean as much as the big ones.
I have a vibration trainer that I have been using to try and keep my muscles in tone. Prior to my operation, I also used it to help control my neuralgia. If I was getting a peak attack and caught it early enough, 5 minutes vibrating my neck and shoulders often nipped the attack in the bud. I'm now using it to help build back up the muscles in my lower body. As it doesn't make me overheat, I find this the best way at the moment.
My other big plus is that my bladder control has improved. This may be because I have sensation back in my lower body, I don't now.
Over all I feel very positive. I just want it to stay that way.
Saturday 2 October 2010
One Week on
It sees almost incredible that it is just over a week since I had my treatment. We've just been for a walk in the woods behind our house. The trees have grown so much in two years, since I was last able to go there. It is a beautiful, sunny, autumn day, the leaves on the trees just beginning to take on their golds and reds. The town fair starts this weekend and bonfire night is not that far away. I was made a great aunt for the third time while we flew back from Poland. So much has happened this year.
Two of my friends are now booked to go to Bulgaria for the treatment within the next few weeks. I hope they get some of the benefit I have.
It is interesting to see how the CCSVI idea is spreading around the world. Reading some of the responses,both positive and negative, I have been reminded of this quotation from Arthur C Clarke:
Every revolutionary idea seems to evoke three stages of reaction. They may be summed up by the phrases: 1- It's completely impossible. 2- It's possible, but it's not worth doing. 3- I said it was a good idea all along.
Roll on stage 3.
Two of my friends are now booked to go to Bulgaria for the treatment within the next few weeks. I hope they get some of the benefit I have.
It is interesting to see how the CCSVI idea is spreading around the world. Reading some of the responses,both positive and negative, I have been reminded of this quotation from Arthur C Clarke:
Every revolutionary idea seems to evoke three stages of reaction. They may be summed up by the phrases: 1- It's completely impossible. 2- It's possible, but it's not worth doing. 3- I said it was a good idea all along.
Roll on stage 3.
Friday 1 October 2010
Back to work Part 2
My second afternoon back at work was yesterday. I was able to think and get things done, and next week I am planning to do a little more.
My head is still clear, no further episodes of breakthrough pain on the neuralgia, although I am still taking my medication. I get occasional "hugs" around my ribcage when tired or stressed, but the incidence of these seems to be reducing. My feet are still warm and sensation remains in my lower body. I am experiencing occasional tingling around the ankle, a new symptom I have not had before.
Robin reports that my walking is getting better and faster by the day, I guess as the muscles are becoming used to working normally again. Certainly stairs are no longer the challenge they once were, and I can carry a cup of coffee without slopping half of it on the floor.
Last night we walked to our local pub to have a meal to celebrate, although yesterday was my last day of heparin injections, so I was on the orange juice. Shame because they do some good real ales there, but that's for another day. To misquote Neil Armstrong, this was a short stroll for man, but a giant leap for MSkind.
My head is still clear, no further episodes of breakthrough pain on the neuralgia, although I am still taking my medication. I get occasional "hugs" around my ribcage when tired or stressed, but the incidence of these seems to be reducing. My feet are still warm and sensation remains in my lower body. I am experiencing occasional tingling around the ankle, a new symptom I have not had before.
Robin reports that my walking is getting better and faster by the day, I guess as the muscles are becoming used to working normally again. Certainly stairs are no longer the challenge they once were, and I can carry a cup of coffee without slopping half of it on the floor.
Last night we walked to our local pub to have a meal to celebrate, although yesterday was my last day of heparin injections, so I was on the orange juice. Shame because they do some good real ales there, but that's for another day. To misquote Neil Armstrong, this was a short stroll for man, but a giant leap for MSkind.
Thursday 30 September 2010
Notes on the CCSVI vs autoimmune theories
With thanks to Joan Beal, here's an extract from her site:
Please read this note I posted last January about hypoperfusion (slow blood flow) and the MS brain. Many researchers had noted this phenomena before Dr. Zamboni came forward with his discovery of CCSVI. Slow blood can create an hypoxic (low oxygen) situation in the brain, and this in itself can damage brain tissue, causing axonal death and activating the immune system. Here is the note:
http://www.facebook.com/note.php?note_id=229656952210
Remember, the autoimmune theory of MS is still just a theory. Doctors have never proven that MS is started by the immune system.
Here is a wonderful editorial on this topic by Dr. Peter Behan, called
"The Futility of the autoimmune orthodoxy in multiple sclerosis research"
"...a false orthodoxy claiming that multiple sclerosis is an autoimmune disorder has developed and formed the present basis of treatment, drug trials and research. The outcome of this misplaced creed has been truly catastrophic.”
http://www.expert-reviews.com/doi/pdf/10.1586/ern.10.69
If you are curious as to how CCSVI could cause lesions and brain and spinal damage in MS, please, read this note and the paper I have linked. Yes, it is very technical, but I break it down into chunks, and explain what the researchers found.
Again, Here's the Note
http://www.facebook.com/note.php?note_id=229656952210
No matter what neurologists may claim, they have never proven that MS is a purely autoimmune driven disease. Researchers have noted that in the beginning the lesions look like ischemic (low oxygen) events, even before the immune system is activated. Here is a link to Lassmann's paper on this: http://www.ncbi.nlm.nih.gov/pubmed/12559509
Here is a paper by Prineas and Barnett--where they study fresh lesions upon autopsy, and discover that there is axonal death without ANY immune activation: This discovery makes them question EAE as a model for MS.
Relapsing and Remitting Multiple Sclerosis: Pathology of the Newly Forming Lesion
Michael H. Barnett, MBBS and John W. Prineas, MBBS
The study describes the clinical and pathological findings in 12 patients with relapsing and remitting multiple sclerosis,
who died during or shortly after the onset of a relapse. Pathological changes not previously associated with the formation of new symptomatic lesions were observed in seven cases, namely, extensive oligodendrocyte apoptosis and microglial activation in myelinated tissue containing few or no lymphocytes or myelin phagocytes. No current laboratory model of multiple sclerosis, in particular, experimental allergic encephalomyelitis, is known with these features, which raises the possibility of some novel process underlying new lesion formation in multiple sclerosis.
http://www.cpnhelp.org/files/Ref1_Annals04.pdf
It is vitally important that we understand the science behind Dr. Zamboni's discovery, in order to be informed patients and caregivers. Slowed venous drainage can create slowed perfusion....just like all those researchers noted in MS brains. There will continue to be much push back from the status quo. They need to maintain the current dogma on MS, in order to keep their jobs and pharmaceutical ties. But we need to ask, How do you KNOW MS is initiated by the immune system? Have you read the other research??
Be informed. Read the research. It's not snake oil. It's scientific fact.
http://www.facebook.com/note.php?note_id=229656952210
Remember, the autoimmune theory of MS is still just a theory. Doctors have never proven that MS is started by the immune system.
Here is a wonderful editorial on this topic by Dr. Peter Behan, called
"The Futility of the autoimmune orthodoxy in multiple sclerosis research"
"...a false orthodoxy claiming that multiple sclerosis is an autoimmune disorder has developed and formed the present basis of treatment, drug trials and research. The outcome of this misplaced creed has been truly catastrophic.”
http://www.expert-reviews.com/doi/pdf/10.1586/ern.10.69
If you are curious as to how CCSVI could cause lesions and brain and spinal damage in MS, please, read this note and the paper I have linked. Yes, it is very technical, but I break it down into chunks, and explain what the researchers found.
Again, Here's the Note
http://www.facebook.com/note.php?note_id=229656952210
No matter what neurologists may claim, they have never proven that MS is a purely autoimmune driven disease. Researchers have noted that in the beginning the lesions look like ischemic (low oxygen) events, even before the immune system is activated. Here is a link to Lassmann's paper on this: http://www.ncbi.nlm.nih.gov/pubmed/12559509
Here is a paper by Prineas and Barnett--where they study fresh lesions upon autopsy, and discover that there is axonal death without ANY immune activation: This discovery makes them question EAE as a model for MS.
Relapsing and Remitting Multiple Sclerosis: Pathology of the Newly Forming Lesion
Michael H. Barnett, MBBS and John W. Prineas, MBBS
The study describes the clinical and pathological findings in 12 patients with relapsing and remitting multiple sclerosis,
who died during or shortly after the onset of a relapse. Pathological changes not previously associated with the formation of new symptomatic lesions were observed in seven cases, namely, extensive oligodendrocyte apoptosis and microglial activation in myelinated tissue containing few or no lymphocytes or myelin phagocytes. No current laboratory model of multiple sclerosis, in particular, experimental allergic encephalomyelitis, is known with these features, which raises the possibility of some novel process underlying new lesion formation in multiple sclerosis.
http://www.cpnhelp.org/files/Ref1_Annals04.pdf
It is vitally important that we understand the science behind Dr. Zamboni's discovery, in order to be informed patients and caregivers. Slowed venous drainage can create slowed perfusion....just like all those researchers noted in MS brains. There will continue to be much push back from the status quo. They need to maintain the current dogma on MS, in order to keep their jobs and pharmaceutical ties. But we need to ask, How do you KNOW MS is initiated by the immune system? Have you read the other research??
Be informed. Read the research. It's not snake oil. It's scientific fact.
Wednesday 29 September 2010
Back to work Part 1
I went back to work this afternoon for a half day. It felt good to be able to walk in, no stick, not needing dark glasses to cope with the fluorescent light, not needing to sit in a quiet space to allow me to think.
But the biggest plus was being able to think like a pharmacist again; to able to draw all the different threads of knowledge and experience together and apply them to whatever was in front of me. I didn't realise how much it was an essential part of my psyche and how much I had missed it, until the ability came back.
The nearest and simplest analogy that I can come up with is typing something on a keyboard. You can use one finger to hack and peck or touch type away freely. You get to the same point eventually, but the latter is much less drawn out and satisfying. Or learning to play the piano. The novice hovers over each key nervously, whilst the expert's hands cause the music to flow seemingly effortlessly.
I have myself back.
But the biggest plus was being able to think like a pharmacist again; to able to draw all the different threads of knowledge and experience together and apply them to whatever was in front of me. I didn't realise how much it was an essential part of my psyche and how much I had missed it, until the ability came back.
The nearest and simplest analogy that I can come up with is typing something on a keyboard. You can use one finger to hack and peck or touch type away freely. You get to the same point eventually, but the latter is much less drawn out and satisfying. Or learning to play the piano. The novice hovers over each key nervously, whilst the expert's hands cause the music to flow seemingly effortlessly.
I have myself back.
Tuesday 28 September 2010
Saw my Neuro today
Still feeling good. Robin says my walking is getting faster all the time.
It was time for my routine appointment with my neurologist today, and Robin came along with me. I told him about my operation in Poland and showed him details of what I had done. After the initial shock, he was quite open to discuss the procedure.
He gave me a good checkout and saw that I was better than when he last saw me. I still have slight intention tremor in my left hand, my reflexes are "brisk", but my feet responded normally to the touching of my soles. Last time there was no response at all.
We had an interesting discussion about the placebo effect and how technique affects surgical outcomes. This was why I had chosen Poland, because of their vast experience. I am to see him again in six months,and he is interested in the results of my follow-up examination in Katowice. For the mean-time, I am treating this as a major remission, and intend to keep taking all my medication except the modafinil (Provigil), which I definitely no longer need.
This may be a study of one, but for those of you interested, I intend to keep a record of how I do from here on in, good and bad, so you can use it to make your own judgements about CCSVI.
It was time for my routine appointment with my neurologist today, and Robin came along with me. I told him about my operation in Poland and showed him details of what I had done. After the initial shock, he was quite open to discuss the procedure.
He gave me a good checkout and saw that I was better than when he last saw me. I still have slight intention tremor in my left hand, my reflexes are "brisk", but my feet responded normally to the touching of my soles. Last time there was no response at all.
We had an interesting discussion about the placebo effect and how technique affects surgical outcomes. This was why I had chosen Poland, because of their vast experience. I am to see him again in six months,and he is interested in the results of my follow-up examination in Katowice. For the mean-time, I am treating this as a major remission, and intend to keep taking all my medication except the modafinil (Provigil), which I definitely no longer need.
This may be a study of one, but for those of you interested, I intend to keep a record of how I do from here on in, good and bad, so you can use it to make your own judgements about CCSVI.
Monday 27 September 2010
Second full day at home.
Despite picking up a headcold, I am still feeling much better than before I left.
I have four days left of heparin injections to ensure I get no post-operative blood clots forming in my newly opened veins. Today I gave myself the injection in my stomach, Robin has done them all so far. It was less difficult than I thought it would be, although diabetics who use insulin daily have my respect. Every instinct cries out against sticking something sharp into yourself, puncturing your skin. I cannot have any alcohol until I've finished the heparin, so the champagne celebrations will have to wait until the weekend.
The staircase is no longer my enemy. Whilst winning no prizes for speed, I can walk upstairs in a fairly normal fashion, one foot per step, and not hanging on to the bannister for grim death. Coming down is a little harder, but still better than before.
There is some criticism of the procedure: that the effects are a results of placebo. If this is placebo, give me more. Seriously though, I have considered this posibility. However, I have had one effect, correcting a problem I didn't know I had.
Robin had said nothing to me, so as not to cause distress, but in recent months the muscles on the right hand side of my face were drooping, making my eyes and mouth lopsided, particularly when I smiled or laughed. I was unaware of this. Since coming back from Poland, that lopsidedness has gone, my face no longer drooping. The first I knew about the whole thing was when Robin told me.
I have four days left of heparin injections to ensure I get no post-operative blood clots forming in my newly opened veins. Today I gave myself the injection in my stomach, Robin has done them all so far. It was less difficult than I thought it would be, although diabetics who use insulin daily have my respect. Every instinct cries out against sticking something sharp into yourself, puncturing your skin. I cannot have any alcohol until I've finished the heparin, so the champagne celebrations will have to wait until the weekend.
The staircase is no longer my enemy. Whilst winning no prizes for speed, I can walk upstairs in a fairly normal fashion, one foot per step, and not hanging on to the bannister for grim death. Coming down is a little harder, but still better than before.
There is some criticism of the procedure: that the effects are a results of placebo. If this is placebo, give me more. Seriously though, I have considered this posibility. However, I have had one effect, correcting a problem I didn't know I had.
Robin had said nothing to me, so as not to cause distress, but in recent months the muscles on the right hand side of my face were drooping, making my eyes and mouth lopsided, particularly when I smiled or laughed. I was unaware of this. Since coming back from Poland, that lopsidedness has gone, my face no longer drooping. The first I knew about the whole thing was when Robin told me.
Sunday 26 September 2010
A day in the park.
Each day brings further improvements.
Today we went to Kew Gardens, where I was able to walk around and enjoy the autumn scenery, although with a few rest breaks along the way. A minor victory included being able to tie my own shoelaces. Doesn't sound much, but a great deal to me.
Although my results have been dramatic enough, I don't want people to think of this operation as the cure for all things MS. If you are truly wheelchair bound, do not expect to get up and walk across the room. It has taken me back to how I was 2-3 years ago. A miracle to someone who hoped for a stop in progression, but the sick man has not picked up his bed and walked away just yet.
We have a long way to go in understanding what the hell is going on here, but I am grateful for the chance to be a lab rat. I will be taking part in the follow-up studies.
Today we went to Kew Gardens, where I was able to walk around and enjoy the autumn scenery, although with a few rest breaks along the way. A minor victory included being able to tie my own shoelaces. Doesn't sound much, but a great deal to me.
Although my results have been dramatic enough, I don't want people to think of this operation as the cure for all things MS. If you are truly wheelchair bound, do not expect to get up and walk across the room. It has taken me back to how I was 2-3 years ago. A miracle to someone who hoped for a stop in progression, but the sick man has not picked up his bed and walked away just yet.
We have a long way to go in understanding what the hell is going on here, but I am grateful for the chance to be a lab rat. I will be taking part in the follow-up studies.
Saturday 25 September 2010
Back home.
Despite a very early departure from Katowice airport , the flight home was a very enjoyable experience. As you will remember that I needed special assistance to get through the airports on the way out.
Coming back, I was able to manage on my own, including up and down the steps of the aircraft. Landing at Luton, we joined the queue for passport control as a woman in a wheelchair , helped by special assistance staff, passed by. Robin laughed at me and said he had never seen anyone so happy to stand in a queue before.
Family and friends who have seen me all remark how well I look. Long may this continue.
Coming back, I was able to manage on my own, including up and down the steps of the aircraft. Landing at Luton, we joined the queue for passport control as a woman in a wheelchair , helped by special assistance staff, passed by. Robin laughed at me and said he had never seen anyone so happy to stand in a queue before.
Family and friends who have seen me all remark how well I look. Long may this continue.
Friday 24 September 2010
Why take the risk?
There has been so much heated debate about the whole issue of CCSVI, and many people, including eminent and well respected physicians, neurologists and patients, advocate waiting until the whole thing is either proven to be another blind alley or the process becomes well developed and routine.
So why did I go now?
To those outside, it may seem like I made a sudden decision, but this is the culmination of much thought, since I got my official diagnosis in 2006. I have always been very sensitive to heat, particularly the sun on my head. Going out in the sun without a hat is very bad news.
Before my operation, when suffering a bad bout of trigeminal neuralgia sitting upright gave me some relief, relative to lying down. Hyperbaric oxygen does give me temporary improvement - at least 2 bar absolute, and the greater the pressure, the longer the relief.
So long before the advent of CCSVI theory, I felt there was something amiss with with the circulation in my brain.
I also did a lot of reading about MS, from its early days of identification, through to the present day.
Jean-Martin Charcot, professor of Neurology at the University of Paris, was the first to complete a detailed study of multiple sclerosis (MS), an autoimmune disease that affects the central nervous system. In 1868, Charcot analyzed some unusual symptoms in a young female patient—tremor, slurred speech, and abnormal eye movements—comparing them to other patients with similar symptoms. He documented his observations and wrote a clinical-pathological definition of MS that is still accurate today.
Throughout his life, Charcot believed that MS had something to do with the venous circulation of the brain.
So why did I go now?
To those outside, it may seem like I made a sudden decision, but this is the culmination of much thought, since I got my official diagnosis in 2006. I have always been very sensitive to heat, particularly the sun on my head. Going out in the sun without a hat is very bad news.
Before my operation, when suffering a bad bout of trigeminal neuralgia sitting upright gave me some relief, relative to lying down. Hyperbaric oxygen does give me temporary improvement - at least 2 bar absolute, and the greater the pressure, the longer the relief.
So long before the advent of CCSVI theory, I felt there was something amiss with with the circulation in my brain.
I also did a lot of reading about MS, from its early days of identification, through to the present day.
Jean-Martin Charcot, professor of Neurology at the University of Paris, was the first to complete a detailed study of multiple sclerosis (MS), an autoimmune disease that affects the central nervous system. In 1868, Charcot analyzed some unusual symptoms in a young female patient—tremor, slurred speech, and abnormal eye movements—comparing them to other patients with similar symptoms. He documented his observations and wrote a clinical-pathological definition of MS that is still accurate today.
Throughout his life, Charcot believed that MS had something to do with the venous circulation of the brain.
My take on what is happening
Although the results for me seem nothing short of miraculous, I don't see this treatment as a cure for MS. I still think I have the disease, and it still has it's claws in me. I have intentional tremor in my left hand, and had a bout of trigeminal neuralgia last night (the room air conditioning blew cold air on to my neck in bed, a surefire way to kick off an attack).
But improving the circulation to my brain has done a lot to improve my symptoms, and those of my fellow people with MS here. Time will tell if it halts the progress.
Warming of hands and feet.
Nearly everyone I have spoken to reports this. One of the key biological controls in the body is to maintain the temperature and oxygen supply to the body core, the central nervous system and critical organs. In the same way as blood supply is withdrawn from your extremities on a cold day to conserve heat, pre-surgery it is being withdrawn to try and overcome the lack of oxygen to the brain. Post-surgery the oxygen is normal, so you get blood back to your hands and feet, and your skin doesn't look as grey.
Balance.
Balance improvement seems to be reported most often where people say they had a worse blockage one side or the other. If one side of the brain is relatively oxygen starved to the other, it processes the signals from eyes and ears slower , and you get resulting imbalance. Equalise things and the imbalance is lost.
Overall cogfog, clumsiness and difficulty controlling hands and feet (including walking)
Look what happens when the brain is oxygen starved at altitude - climbers and pilots not breathing supplemental oxygen. Compare that with MS patients. Look familiar? Now give the brain back its oxygen supply. Lo and behold the symptoms go. Scientific studies have shown reduced oxygen perfusion in MS patients relative to healthy controls.
Fatigue
I went for a walk around Katowice today, and when I got back my body was tired but the 'I have been active' tired, not the overwhelming MS fatigue that hits regardless of what you have been doing.
It will take some time and work to get my muscles back in shape, but I expect things to improve as they do.
If the blood is not draining from the brain properly, the waste products of metabolism will build up
regardless of physical activity. Eventually the brain itself has to slow down to clear the backlog. Hence the almost coma-like sleep many of us experience in these circumstances.
Immune involvement
It may well be that the oxygen starvation and toxin build-up result in some cell death in the brain tissue which triggers the immune system and sensitises it to myelin. Other studies indicate iron build up in the cells of the brain, which may trigger the failure of the blood-brain barrier.
So if you can beg steal or borrow the money, or better yet get your medical authorities/insurance to pay for you to get this treatment, I would say go for it. I was patient number 998 in 2010 here, and they have had no major adverse events.
The only way is up.
But improving the circulation to my brain has done a lot to improve my symptoms, and those of my fellow people with MS here. Time will tell if it halts the progress.
Warming of hands and feet.
Nearly everyone I have spoken to reports this. One of the key biological controls in the body is to maintain the temperature and oxygen supply to the body core, the central nervous system and critical organs. In the same way as blood supply is withdrawn from your extremities on a cold day to conserve heat, pre-surgery it is being withdrawn to try and overcome the lack of oxygen to the brain. Post-surgery the oxygen is normal, so you get blood back to your hands and feet, and your skin doesn't look as grey.
Balance.
Balance improvement seems to be reported most often where people say they had a worse blockage one side or the other. If one side of the brain is relatively oxygen starved to the other, it processes the signals from eyes and ears slower , and you get resulting imbalance. Equalise things and the imbalance is lost.
Overall cogfog, clumsiness and difficulty controlling hands and feet (including walking)
Look what happens when the brain is oxygen starved at altitude - climbers and pilots not breathing supplemental oxygen. Compare that with MS patients. Look familiar? Now give the brain back its oxygen supply. Lo and behold the symptoms go. Scientific studies have shown reduced oxygen perfusion in MS patients relative to healthy controls.
Fatigue
I went for a walk around Katowice today, and when I got back my body was tired but the 'I have been active' tired, not the overwhelming MS fatigue that hits regardless of what you have been doing.
It will take some time and work to get my muscles back in shape, but I expect things to improve as they do.
If the blood is not draining from the brain properly, the waste products of metabolism will build up
regardless of physical activity. Eventually the brain itself has to slow down to clear the backlog. Hence the almost coma-like sleep many of us experience in these circumstances.
Immune involvement
It may well be that the oxygen starvation and toxin build-up result in some cell death in the brain tissue which triggers the immune system and sensitises it to myelin. Other studies indicate iron build up in the cells of the brain, which may trigger the failure of the blood-brain barrier.
So if you can beg steal or borrow the money, or better yet get your medical authorities/insurance to pay for you to get this treatment, I would say go for it. I was patient number 998 in 2010 here, and they have had no major adverse events.
The only way is up.
Out of Hospital - Check ups
The first of my check-ups was yesterday afternoon with the neurologist. He smiled, but said he could think of no neurological explanation for what he was seeing.
Then this morning another Doppler ultrasound with one of the doctors from EuroMedic. Flow is now good in both my left and right jugular veins. Because they are both quite wide, the risk of restenosis is apparently quite low. Just keep up my injections for the next week, and then back in 6 months for a check-up.
I have some bruising in my right groin, where they accessed my femoral vein, and on my left hand where my IV cannula went in, other than that, fine.
These are two screen shots from my operation, showing pre and post angioplasty:
Here you can see the contrast medium building up in my jugular, as it is unable to flow through, and spilling into some collateral veins.
After the ballooning the contrast is flowing straight through, down and towards my heart. This was the darkest image I could find, because the contrast medium went away so fast. There is no collateral vein circulation here.
Then this morning another Doppler ultrasound with one of the doctors from EuroMedic. Flow is now good in both my left and right jugular veins. Because they are both quite wide, the risk of restenosis is apparently quite low. Just keep up my injections for the next week, and then back in 6 months for a check-up.
I have some bruising in my right groin, where they accessed my femoral vein, and on my left hand where my IV cannula went in, other than that, fine.
These are two screen shots from my operation, showing pre and post angioplasty:
Thursday 23 September 2010
Why Poland?
Places offering the Liberation Treatment are springing up all over the world, as the clamour from patients gets louder and louder. I wanted it done, but I also wanted to feel confident in the place and staff. After Dr Zamboni, there is probably one name that leaps out:
Dr Simka
He is head of the clinic here in Poland offering the treatment, and everything I saw and heard increased my confidence in them:
EuroMedic
Travelling to another country for any medical procedure is a scary business. In the UK there is much talk about people travelling abroad for work, then having to have the NHS sort out the mess after their return home.
Then of course there is the cost, not just of the treatment, but getting there and back, hotels etc. When I found that there was a flight from my local airport to Katowice, the decision was made.
Dr Simka
He is head of the clinic here in Poland offering the treatment, and everything I saw and heard increased my confidence in them:
EuroMedic
Travelling to another country for any medical procedure is a scary business. In the UK there is much talk about people travelling abroad for work, then having to have the NHS sort out the mess after their return home.
Then of course there is the cost, not just of the treatment, but getting there and back, hotels etc. When I found that there was a flight from my local airport to Katowice, the decision was made.
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