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.

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.

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

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.

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 :

Collecting Thank Yous for Dr. Zamboni

by CCSVI in Multiple Sclerosis on Friday, 12 November 2010 at 15:18

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

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.

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?