I’ve mentioned this book before, but if you don’t have CCSVI as the Cause of Multiple Sclerosis: The Science Behind the Controversial Theory by Marie Rhodes and Elaine Moore, you should click on the link and get it RIGHT AWAY!
It is a shame that CCSVI is not given more attention and credence by the medical and health insurance industries. Far too many MS patients are not receiving this treatment. Again, it is not a cure, but the following are my arguments why it should be a routine procedure for EVERY MS patient in the world.
1. It is not a medication with risky side effects. The treatment is not a medication, but rather angioplasty, a medical procedure, which has been performed hundreds of thousands of times with virtually no side effects. Contrast that to MS and other medications prescribed to patients that carry unbelievable and sometimes unforeseeable side effects (see next argument). Tysabri has caused the trigger of PML (progressive multifocal leukoencephalopathy), a virus that causes brain damage and can lead to death, a fact admitted even by Tysabri’s manufacturer Biogen.
2. Most (if not all) of the MS medications have proven ineffective or at a minimum not cost-effective. There are studies that show that there is no difference in progression of the disease between people who took MS medications and those who did not. There is also a recent study that questioned the cost-effectiveness of these medications. The study concluded that “adding an injectable disease-modifying drug to the treatment of MS patients roughly doubles the cost of care, while only providing small population-level improvements in survival and quality of life.” Translation: most MS meds don’t work on most people.
3. Anecdotal evidence indicates that there is an improvement in the symptoms of MS patients. The big gripe by the medical and insurance communities is that there are insufficient studies about the CCSVI angioplasty procedure, yet they are the same ones blocking or refusing to participate in such studies. Hmmmm. . . makes you think, huh? Studies are ongoing, however, and until they are completed, can’t we rely on some very good anecdotal evidence? If not, why not? The amazing thing is that the medical community says the anecdotal evidence is caused by the “placebo effect.” Huh? First, a placebo is when you are not given any treatment or medication – typically you are given a sugar pill compared to the test medication. The CCSVI procedure isn’t a medication (as said above) AND it is actually performed on the patient (it’s not like they are faking an angioplasty). Thus, the “placebo effect” response is not only scientifically inaccurate, it is intentionally deceptive.
Frankly, it gets me angry that purported scientists would even make this remark.
Isn’t science = hypothesis + experiment + collection of data + conclusion?
CCSVI is science = opening clogged veins will remove unwanted toxins + angioplasty procedure + blood flow is improved + patients experience changes in their symptoms + the procedure must help.
4. The “auto-immune” theory no longer holds water. This is just factual. Yes, it is true that an MS person’s immune system turns against itself and destroys myelin in the process. But this theory has never answered the question WHY? Why does the immune system turn against itself? CCSVI answers the question (even though the scientists don’t like the answer). The immune system becomes active because the vein blockage does not allow destructive toxins to leave the brain and spinal cord areas, and therefore the toxins begin to attack those regions (hence the buildup of placque), and then the immune system tries to come to the rescue, but fails by attacking myelin rather than the toxins. As one person so aptly put it, it’s like owning a house without a toilet. Where does all the waste go without a means to flush it out?
5. The proof is in the pudding. The medical community has never had an answer or even a treatment path for those who are secondary-progressive. Again, this made no logical sense. If a medication works on a relapsing-remitting MS person, why wouldn’t it work on secondary-progressive who were formerly RRMS? Once again, CCSVI answers this question. Vein blockage is the initial cause, not allowing the toxins to escape. Over years, placque builds up and causes MS symptoms by loss of myelin and damage to the brain and spinal cord. So, if you use the theory of the doctors, CCSVI wouldn’t work on secondary-progressive people either. Oops. See the video link below that shows the contrary – that CCSVI actually DOES work on secondary-progressive patients:
Michelle Walsh, Saskatchewan, Canada, Secondary-Progressive MS
We are investigating whether Deanna would qualify for further CCSVI treatment. We’ll let you know.
Wow! Great post TJ! But then again, we are just simpletons that don’t understand science. We WILL keep fighting for pwMS and CCSVI, even tho the docs and pharma refuse to see the light!
as happy as I am for everyone who has had a successfull CCSVI I must tell the other side. I have had my operation 7 months ago, I didnt restenosted but my walking/balance never been worser. I cant walk now even walk the shortest distance (I was able to do before). My walking started getting worse the day after the operation-and no i dont work for the pharma instustry nor I am a neurologist1 mY LIFE JUST TURNED SHIT SINCE THE OPERATION
First, let me say I am sorry your symptoms have worsened / increased. I know the hardships of MS firsthand through my wife and it is a very cruel disease. However, I doubt highly that the increase of your symptoms is due to the CCSVI procedure. There would be no reasonable causal link for that. All CCSVI is doing is freeing up the blood flow of your azygous or jugular veins, in other words allowing the blood carrying the toxic waste products to be free to dispose of those products in the normal body processes. If you consider that the arteries carry the good blood (with oxygen and minerals and vitamins critical to body functions) and the veins carry the bad blood (with carbon dioxide and waste products that the body no longer needs), they both should function and flow well so that the body can distribute the good blood and cleanse (or renew) the bad blood. If the veins are blocked, the bad blood just sits in the body and increases toxicity. All CCSVI is doing is opening up those clogged veins allowing the bad blood out of the brain and spinal cord. I’m not a doctor, but I doubt highly that can ever be a bad thing.
Now, all that said, this is not to deny your symptoms or that your doctor may have made a mistake in the procedure. Where did you have your procedure, if you’re willing to disclose? Perhaps you had someone untrained in the procedure or unable to diagnose the stenosed veins.
Unfortunately, you are more likely experiencing an exacerbation, which could be caused by many different things – other illness or infection; the ‘relapsing’ portion of ‘relapsing-remitting MS’; stress; changes in your life; or maybe something went wrong during the procedure. You should probably consult with your neurologist and your family physician to determine what might be causing this recent increase in symptoms. You may need a different medication or a steroid treatment or to resolve the other medical reason (such as a cold or infection). Another possibility is that the MS disease has progressed at a more rapid rate for you than for other patients and you are just noticing the symptoms now. My wife is much like this. She has had “bursts” of progression, where things got worse (long before her CCSVI treatment).
I say all this, not only to defend CCSVI but also to make you aware that medically-speaking there is probably no causal connection between your symptoms and CCSVI. But to be sure, I would highly recommend you consult with your physicians team (including the physician who performed the CCSVI procedure) to get a better analysis of what is going on with you.
Again, I am sorry about your symptoms. I know sometimes MS can really try your patience and faith. Best wishes for you and hope for a more healthful 2012.
mIRA
Wow, I am so sorry your MS has sucked so much. Believe me, as a pwMS, I TOTALLY understand that feeling. I have heard that some people have not improved or have even worsened after the procedure. Obviously, I am not a doctor, so I can’t begin to diagnose why this happens, but I often wonder if the stress of the procedure alone causes some people to have an exacerbation.
In addition, I have also heard that the vein might immediately restenose (imagine a rubber band snapping back into place). Perhaps you have very small veins and there was inflamation in them after the procedure and/or scar tissue that developed, thereby inhibiting better blood flow. I know in my own situation, my left jugular has been described as a “train wreck”. I was told by Dr. Sclafani that it is extremely small. I have had it ballooned twice and he said it appears to get more narrow after each procedure (likely due to scar tissue). Stents were mentioned by another well respected doctor, with the warning that my issues are very high up and in a risky area. I experienced miraculous results after my first procedure (in Sept. 2010), but those results diminished after several weeks. Since then, my other procedures did not produce the same results; however, I HAVE NOT GIVEN UP HOPE! I know what I felt and I know it was amazing. There is something to this and the science is still so young. The important thing is that we push for that science and the studies to move forward so that we are not prisoners to this disease. I am also having lots of walking issues these days, but I follow the science very closely.
When I first asked my very well known neurologist about CCSVI in March 2010 he actually snickered at me and told me about how the other neuros were laughing about it. HOW DARE THEY!!! This disease sucks!!! I am not saying CCSVI is the cure, but I am soooo glad that we now have some very brilliant doctors (IRs and vascular surgeons) that are studying it. No drug ever made me feel as good as I did for that month following the first procedure.
I would love to know where you had your procedure done and what the doctor said. You may be one of those people with a difficult condition (like myself) or there might be other alternatives. Please do not give up.