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.

Zamboni believes that the high association of MS and thyroid disorders is due to slowed venous flow. The thyroid veins connect directly into the jugulars.

http://www.bentham.org/cnr/openaccessarticles/cnr6-3/Paolo%20ZamboniII.pdf

 And here is the link in Pub-Med for your doctors:

http://www.ncbi.nlm.nih.gov/pubmed/19534716

The newest, freshest lesions--found upon autopsy, have the ischemic injury before immune activation. The only way to study lesions is in autopsy brain tissue, after the patients have passed and time has passed. But here is a study on fresh lesions in accident victims and newly deceased by Prineas and Barnett
http://www.cpnhelp.org/files/Ref1_Annals04.pdf

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.

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.

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.

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.

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.

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.

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.

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.

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.

One cane available, genuine reason for sale.

Today is the first day of the rest of my life.
Sorry for the platitude, but this is the day for them.To my on-line friends - I'm still a unicorn free zone, though.

At 6am in the hospital, one of the surgeons came round and checked with everyone that they had no problems after their angioplasty, issued their documents and CDs of their treatments and a prescription for whatever medication they were going to need as a follow-up.

 Throughout, all the medical staff have been scrupulous in not discussing what the surgery may or may not do for your MS. Just what your tests showed, what they did as a result, and the results of your surgery. No raising of hopes and expectations. Vascular surgeons, carrying out a vascular procedure.

But for us, the patients, things are different.

Last night, sensation returned to my feet, and I was able to get into my pyjamas without leaning on the wall for support. That may not seem much, but to someone with MS, it is a big deal.

Today, I am standing and walking without my cane. For the first day in a longtime, when I did that system check on waking, to see what is or isn't working today, and things were better than they were yesterday. It is hard to explain the sheer joy of that feeling. Instead of the insidious decline into the darkness, I have taken a few leaps towards being normal again.

Of my cohort of five patients:

1. (me) balloon angioplasty - walking without cane, balance back, head clear.

2. balloon angioplasty - walking without rollator, balance back, head clear, hands and feet warm, speech no longer slurred.

3. balloon angioplasty - still mostly wheelchair, but increased mobility in arms and legs, hands and feet warm, head clear

4. one stent - whellchair bound, speech back, hands and feet warm, head clear

5. jugular blockage reduced from 90% to 40%, may need further surgery, no change in symptoms.

Today is the day

8am in the hotel lobby.

A cluster of nervous people assembled, waiting transfer to the clinic. Overnight bags packed, paperwork ready and adrenaline pumping.

Our driver takes us to the clinic where we hand over our paperwork , change into hospital gowns and get into bed. In between the nurses bustling around, taking blood and urine samples, attaching sensor pads for the ECG machine and generally getting us ready, we are each seen by the anaesthetist and a neurologist.

Each of the rooms has three beds, and by the time one of the surgeons comes in to carry out a Doppler ultrasound exam on me, we hear that the first procedure is over and the second is underway.

I go in at about midday, having had a number of litres of fluid via IV and a catheter fitted. To be honest I remember little of what happened from there onwards. Access is done via my right femoral vein, where a local anaesthetic is used, and I am given light sedation to keep me relaxed.

After what felt like 5 minutes, but was in fact about an hour, the surgeon came to my head, to say that they had done balloon angioplasty with excellent results. I was wheeled back and put to bed where Robin was waiting.

First Day

Everything here runs like a well oiled machine. Each day, a fresh cohort arrives and one leaves, others passing through the sequence of tests and operation.

Day one is tests , starting with  optical coherence tomography, which is being mooted as a better test of disability progress than MRIs. My own results correlate quite well with my Doppler test from Dublin and my experience of symtoms to date.

Then back to the hotel for a detailed presentation on the procedure by one of the clinic medical staff, followed by a question and answer session. Plenty of information on the potential risks and also statistics of what they have actually experienced here. Over 500 patients and no major adverse events, just under 60% balloon angioplasty alone, the balance requiring stents.

They check and work on the jugular, brachiocephalic and azygous veins. Venography during theatre is used to assess blockage and progress throughout.

After the talk, we go off for MRV testing. This is using MagneticResonance Imaging to look specifically at the veins associated with the central nervous system. So far at Dr Simka's clinic only two patients have stopped at this stage, because they showed no signs of CCSVI.

I hate MRIs. I would rather have another lumbar puncture than an MRI, but this is somthing I have to go through, if I want to progress, so it is grit your teeth and go on with it.  Once the technician/radiologist starts to fasten the coils around my chest, I close my eyes and start to go over our sailing trip in my head. That way I don't see the cage go round me head, or the narrow tube as I go in.

Thankfully the ear muffs reduce the sound to unpleasant, and thw whole thing is over seconds before I press the "I can't take this anymore" button in my right hand.

So back to the hotel. Nothing to eat or drink after midnight.

Monday 20th September

One hell of a birthday.

Up early and off to Luton Airport for our flight to Katowice. I didn't sleep well last night, nerves I guess.

We parked the car in the disabled slots, near the terminal and went to check in. By now we are familiar with the location of the travel assistance desk, where you pick up a wheelchair to get through the terminal and arrange help to get on the plane. I must confess to bursting into tears the first time we used their services, but now I know it is the only way I can make the flight.

Last onto the plane, via a special lift and avoiding any stairs, the flight was soon underway. I glanced out of the window to work out where we would be crossing the English coast, to see the recognisable shape of Tollesbury Fleet , the marina and the River Blackwater pass beneath us. It felt like Catabout was calling out to me.


So our two great adventues this year are linked again. Is this an omen? And if so, good or bad?

The next step

Those of you who read my last blog, about our sailing adventures, may remember me talking about having some tests done in Dublin. Well this one is all about the follow up; a trip to Poland to have further investigations and a form of angioplasty, known in MS circles as the Liberation Procedure.

Multiple Sclerosis is a very frustrating disease. It is chronic, progressive and incurable. The only treatments available are symptomatic, ie to help things like bladder control and depression, or aimed at slowing down the rate at which you get worse. The side effects vary from skin reactions to death.

There are no hard facts about how many people in the UK and round the world suffer from it (no actual numbers are recorded anywhere) but the official guesstimate is about 100,000 in the UK alone. So you can see there are a lot of frustrated people out there watching their lives drain away as their immune system eats away at their central nervous system.

Yes, there are still some who are able do a lot, although this is usually in the earlier stages of the disease. Or at a price. That day at a family wedding is at the cost of three or four days of pain and complete exhaustion afterwards.

So we are all looking for something to halt or even by some miracle reverse the progression. Diet, supplements, daily injections, chemotherapy, oxygen therapy, stem cells, bee sting therapy. All are used, but so far nothing halts the relentless progress. The cause(s), triggers etc remain unknown. As you will appreciate anything new causes a stir. So when a new theory emerged that a problem with blood drainage from the brain and spinal chord was one of the potential causes of MS called Chronic Cerebral Venous Insufficiency (CCSVI) and that a relatively simple operation was possible, well......

In this, the Internet age, Dr Zamboni's theory has spread like wildfire. Chat rooms and forums have endless discussion of the pros and cons. Doctors, vascular surgeons and neurologists are clearly divided. As debate rages around the world, what is an individual person with MS to do?

As with all things related to this disease, it comes down to that individual. Some countries have decided, notably Kuwait, to offer all their citizens the treatment, and do a retrospective study on the effects on relapse rate and disease progression. Others are funding some studies which make take several years to produce meaningful results. Meanwhile a number of centres have sprung up around the world offering the procedure to those who would rather not wait and have the resources to fund their own treatment.

So next Monday I fly out to Poland. The Doppler ultrasound investigation I had done in Dublin showed a definite problem on my right internal jugular vein. So nothing ventured, nothing gained. I'm giving it a try. My brother died as a result of this damned disease, and I'm not going down without a fight.