In my previous post I introduced the theory of a researcher named Doctor Zamboni who believes that the Multiple Sclerosis is not primarily an autoimmune disease but a vascular one. The theory that Multiple Sclerosis has a vascular cause is called Chronic Cerebrospinal Venous Insufficiency which is abbreviated to CCSVI. Basically the theory is that the neurological damage one sees with Multiple Sclerosis is really caused by blockages in the veins of MS patients.
You might want to read my introductory post on this topic and review the links to get a better understanding of this theory and the research it is based upon.
As promised, today I am going to be posting my interviews with two of the people who have undergone endovascular surgery in the hopes that it would help relieve their MS symptoms.
You may read the interview of MS patient, Mark Miller here.
I now present Lew Chapman who has graciously volunteered to be interviewed about his experience before and after his surgery.
How did you first find out about CCSVI?
I first found out about CCSVI on an internet forum/support group called ThisIsMS.com (spinal tap parody!). It's a place where folks with MS go that don't want to be on a website sponsored by a pharmaceutical company. They don't delete posts that are talking about things like this or that are critical of that companies' product.
What scientific proof is there that MS could be considered a vascular disease as opposed to an autoimmune disease?
I must admit to you that it's in its infancy. However, there are a ton of reference materials, including the pioneer of this technique's paper written as an evaluation of the many patients he has treated. Here are some links: Zamboni et al 2007 Intracranial Venous haemodynamics in MS, Zamboni et al 2009 The value of cerebral doppler haemodynamics in the assessment of ms, Zamboni et al Dec 2008 "Chronic cerebrospinal venous insifficiency in patients with multiple sclerosis"
The third link there is the main paper. He is "rolling out" this research at a big conference in Bolgna, Italy on September 8th, and I'm quite sure the news will be ground shaking. We have one of our forum members going to that conference. There are so many papers and references backing this theory up that it's not even funny. Here is also a link to a "layman's terms" document that really is the one that swayed me. Not having a medical education, there is a vocabulary ignorance I'm dealing with. I simply don't know the meaning of lots of the molecular and cellular things that they are talking about. Here is the link to that document
That is the one that convinced me; especially the stuff about congestive venous myelopathy. Another very important ‘convincing' agent for me was the creation of this foundation and its mission.
Here is another interesting paper.
As you can see, there are lots of papers supporting this, but the stuff coming in early September will be what Zamboni says will be his "irrefutable" proof, and I'm quite sure it will do a much better job than I will of explaining how the lesions that form are in line the venous occlusions; and it will be peer reviewed. Also keep in mind that the autoimmune model of MS is still only a theory. There is not an identified antigenic target. For that reason alone, autoimmune is just a theory, although kind of like manmade global warming. Write enough and throw enough dollars at it and it gets accepted as fact even though man's contribution to it is also a theory. So people will speak to it like it's a fact, when in actuality, it is not.
What type of MS do you have and how long have you had it?
I have SPMS right now. I'm sure I started RR, although I've never had easily identifiable lesions on my MRI and also never ‘remit', i.e., what show up stays with me. 100% of the time and I never recovered from any new symptom. I have had it for just over 8 years. I am an EDSS of 4.5, but still working somehow.
What was the surgery like?
The surgery itself was very benign, although kind of lengthy as they are exploring while they are fixing. By benign I mean not painful DURING the surgery. You are in twilight as they need you to hold your breath at certain times and things like that. I was on the table for almost 3 hours. There is some pain in the recovery period, but I did it with Advil.
What were the risks?
The risks are almost all in the blood thinners used in the procedure. It is an endovascular procedure where they go through a small hole in your groin. I can't think of anything else.
How much did it cost and will insurance cover this?
I believe it is somewhere around $80,000. My insurance covered it out of network.
Where do you go to have such a surgery done?
I went to Stanford Medical Center in Palo Alto, Callifornia. As far as I know, that's the only place you can go in the US right now. SUNY in Buffalo is doing the imaging just to see if they see what is claimed, but they aren't doing the repair. It's really getting legs though and look for this to be a hot topic after September 8th. There are also others that are investigating by imaging, but I don't know who they are off hand.
Do you see any improvements in your MS symptoms since the surgery?
I saw some immediate improvements in cerebral stuff. My spinal stuff is still all there like it was, but I'm not on Tysabri anymore and I'm not progressing right now. I was on Tysabri. I have more stamina and don't use my cane anymore as my balance is better and I'm not as dizzy all the time. There are a few people I know who've only had MS for a few years that were still RR. They had this and are doing incredible and don't even feel like they have MS anymore. No heat intolerance and the stamina they had before MS has returned. The one gal, who had already gone on disability, is back to work full time and exercising after work! People from Italy who've also had this now for a couple of years are starting to come forward and not a one of them has any complaints.
What do you say to critics, including neurologists and doctors that say that this is an implausible theory and that it offers false hope to MS patients?
I'd ask them a series of questions. The first would be to have them explain why they are convinced MS is autoimmune with no antigenic target. Secondly, think about the fundamental definition of MS. It means many scars. Don't you have to do something to create scars? They will tell you it's your oligodendrocytes eating your myelin. That is true even in the CCSVI model. However, autoimmune theorists do not have any plausible theories concerning why your immune system does it. The ones they have all don't pass the smell test for me. NOTHING is common across RR, SP and PP.
In CCSVI it is. We ALL have the venous stenosis. Not one single thing ties all MS patients together, save clinical expression of symptoms, in the autoimmune model. Why do you think it's so hard to diagnose? So some will say it virilogical; just not in all cases. Others will say it's environmental; just not it all cases. Also have them try to explain CCSVI away after they actually READ the research.
Any neurologist I've encountered who actually reads it is taken aback. It's the ones that read the first page and then toss it on the table who want to argue. Remember, this is a long standing paradigm with a massive amount of time and dollars attached to it. I'd also say "false hope?". How is fixing a REAL venous drainage problem going to cause me ANY harm. Answer: it won't. Now if it turns out that it doesn't have an effect of MS, well then you now have properly functioning haemodynamics in your brain, but you don't have all these dangerous drugs with harmful, sometimes fatal, side effects that are marginally effective at best.
Look at the actual structure of the trials for the ABC drugs. They all had brand new MS patients. Look at one of the ads for, let's say, Rebif. It will say "Karen, dealing with MS since 2008" and she'll be on a mountain bike. Well I say big deal! 5 years into my MS, I was still running 5 miles a night, every night; and that was after a 10 hour shift. So don't pick a bunch of scared people who think MS means a wheelchair, give them your drug during the first year, and have them fill out the functional composites. I didn't have a single lesion on my first 5 MRI's, yet I had symptoms and a "positive" spinal tap and "positive" evoked potentials and all the typical bladder, bowels and eyes symptoms. The current therapies are like using a sledgehammer to drive a finish nail.
Since they don't know the antigenic target, they use drugs whose intent is to drop you ENTIRE immune system. Does that even sound right? Plus dig into the actual statistics on these drugs. And they don't do anything for someone who is actually dealing with MS that is more than a nuisance. That's the truth. I can say this with confidence. The only people "happy" with any of those drugs are very mildly affected MS patients. I am envious of them. However, I was on Avonex, Tysabri, and Tovaxin and had attacks and progression on all of them. No one who has ‘real' MS has any use for them except we all need hope and it's something to hang that on.
My second question would be "tell me for real why you think it's implausible?" I'm here to tell you, they won't be able to as it IS plausible. The ones who tell their patients that usually get rather dismissive and sometimes even a little snarky, just showing that they don't have a good argument. Remember, Doctors aren't used to being questioned by their patients.
You may read more about Lew Chapman's personal experience on his personal blog called, "My Hopeful Journey into Actual MS Recovery."
Thank you to Mark and Lew for answering my questions. I am sure a lot of folk are going to be interested in where this research leads.
Just want to re-state that the views and opinions expressed in these interviews do not reflect the views of MS Health Central. We are neither condoning nor refuting the claims that this type of surgery helps to treat the symptoms of MS. There are many critics of this theory that MS is a vascular disease and we are going to hear from one of these critics, Doctor Nitin Sethi, a neurologist and fellow blogger on Thursday.
We also want to hear from you, our readers, about what you think. There are a lot of theories out there and sometimes conflicting research. Do you feel that this is a plausible theory to explain the cause of MS? Or do you feel that this is just another goose chase towards an impossible cure? Let us know what you think. Your opinion matters!
Published On: September 08, 2009