Tuesday, 14 September 2010

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.

1 comment:

  1. Congratulations on your new blog. Hope it helps millions. Power to the People!