My MS friends will understand when I say we're angry and frustrated by the medical community's very slow moving system. This will not be a rant about health care in this country - not enough hours in the day to write about that - but thanks to the MS online community people all over the world have come together to demand - yes, demand - alternatives to the expensive, toxic drugs that are pushed on us. For me, the drugs didn't work. Seven years into this disease and I'm now classified as SPMS (secondary progressive multiple sclerosis) with an EDSS score that went from 2.5 to 7. Listen people, seven is not a good score when 0=no disability and 10=death.
So when Dr. Paolo Zamboni (yep, like the ice machine) published his small study 3 years ago finding that a condition called CCSVI - Chronic Cerebrospinal Venous Insufficiency - was seen in about 92% of people with MS, we pricked up our ears. (For a short history of CCSVI click on the link under "Other Writings".) What did that mean? No one really knows for certain.
CCSVI for Dummies
1. In CCSVI the veins carrying blood away from the brain are either narrow, blocked, have a valve problem, or are otherwise occluded. The medical term is stenosis. This can cause the blood to reflux back into the brain, theoretically leaving iron deposits that cross the blood/brain barrier - where they don't belong.
2. When a procedure called a balloon angioplasty (or more correctly, venoplasty since it's done on veins rather than arteries) was performed to open up these veins, many people with MS saw improvement in their symptoms. Angioplasty is performed thousands of times a day on arteries, less often on veins. It is done by heart surgeons and more commonly by interventional radiologists in a cath lab.
3. Since no long term studies have been done associating CCSVI and MS, the medical community (read Neurologists) and the insurance industry (read greedy bastards), and the drug companies, (read deep pocket greedy misers) have done nothing but try to discredit this theory. Well yeah, it's not in their financial interest and certainly will be to their financial detriment if proven correct.
4. Because the MS community around the world kept clammering for more information, more treatment, more studies, more HELP, the world had to respond. Only recently have organizations like the National MS Society agreed to fund studies, (but barely and not wholeheardedly - under duress IMHO).
5. So far (that we know about) 1,200 brave people went outside the US and Canada to get this procedure done. They posted their before and after videos on YouTube. They started blogs and chat rooms. They founded non-profit groups and facebook groups so we could share information. They held fundraisers for each other. Leaders and strong patient advocates emerged to teach, encourage and actively support those who want to get the procedure done.
6. Many had dramatic improvement. Some had smaller improvements. One person very early on died after a stent migrated to the heart. A few had no change in their symptoms. We don't know exact numbers because this is annecdotal information, as the medical community loves to point out. A "look back" study could be done but no one seems to be doing that. Why not? No money in it.
I've been learning, watching and waiting. I asked my neurologist if he could order an MRV of the jugular veins when I had my annual marathon of MRIs last month. He is not an advocate of this theory but he is also not opposed to it - he feels more study is needed. Well, yes, we all agree study is needed, but my MS isn't waiting for studies - it's marching along quite happily causing me pain and fatigue and more disability. So I can't wait. And guess what: lo and behold, the MRV showed narrowing in both jugulars. A third twisty vein (Azygous) in the chest can't be seen on MRV but there's a good chance there's a problem there too. So step one accomplished - we know my veins are not normal. What do I do with that information?
The Society of Interventional Radiologists held a meeting about CCSVI and treatment last month which opened the door to many more questions but also gave legitimacy to this diagnosis. University of Buffalo has an ongoing study of 1,000 people that thousands more sought to join. Quickly clinics were opening in places like Mexico and Costa Rica which I was immediately wary of. Better alternatives seemed to be Bulgaria or India (strange but true). However, I just couldn't make the leap to travel that far for a possibility of help. An Albany clinic which is quite reputable has a huge waiting list but, I don't want to wait another year.
So this week, I read about a place in California. They are an established practice in Interventional Radiology with Board Certified doctors, and they will do this procedure to treat CCSVI. Email correspondence and voice mails exchanged and they said they could take me in October! It will require a 4 day stay in the area but the procedure is done as an outpatient. My son, bless him, also called them but got voice mail and left a message. But he may actually know one of the radiologists in the practice from St. Vincent's hospital where he worked! I'm now waiting for a return phone call to schedule a specific date.
I'm excited, nervous, scared, and hopeful all at the same time. I will be one of the pioneers. One of the brave who, despite conventional medical advice, will finally take control of my own disease. I really think this will be a history making year in the annals of MS treatment. Not a cure - personally, I don't think they will find a cure because in my limited medical opinion, there is not just one cause of MS. But this can be a treatment that will let people live a better quality of life - and that is what we all want and need. Quality of life is what it's all about.
It's expensive - insurance will not cover me. There are no guarantees and in fact, they make you sign that you've read and understand their disclaimer. I'm realistic and not expecting miracles. But I'm out of choices and running out of time. Every day is a struggle and while I'm a pretty strong person and a fighter, I'm telling you that I'm exhausted! I have so much admiration and respect for the ones who have battled MS for 20 and 30 years. It's so damn hard to keep fighting while staying positive. So before I become an old curmudgeon, I'm taking action. When I put the date on my dance card I'll let everyone know. I told them anytime after October 1 because I have tickets for Crosby Stills and Nash and I'm not missing that! (I also need to arrange time away from work.) Meanwhile, anyone want to come along to California and keep me company when they drain my brain?