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 this endovascular surgery in the hopes that it would help relieve their MS symptoms.
Please meet Mark Miller. Here is an image he has graciously supplied for this interview showing the stents in his jugular vein.
How did you first find out about CCSVI?
From a totally unrelated message board posting, I clicked on the study, it looked interesting, I clicked further, then somehow found the message boards, which I read from front to back, practically every post, just because it was so new and fascinating and not what I had expected.
What scientific proof is there that MS could be considered a vascular disease as opposed to an autoimmune disease?
Well, that's kind of a loaded question, being that it presents the disease as an either/or proposition. I proffer it's both, to varying degrees, for varying reasons, none of which we truly have any sort of grasp on. Do I consider MS ONLY an autoimmune (we abbreviate AI) disease? After what I've seen in the evidence, NO.
After what I've experienced following the stenting of my occlusions, well that's another story.
What type of MS do you have and how long have you had it?
I have the typical RRMS disease course (for now). In 2004 I awoke to this weird double vision thing. Just like that! People that knew me, well you could see it on their faces, normal Mark suddenly had one eye turned in, "can't be a good thing!".
At that time they were still in the "we need a 2nd clinically definite relapse to categorize and offer the CRABS drugs". Not so anymore of course.
So in about 4 months my eye stabilized to normal and that was that. But I've felt it creeping in ever so slightly in the time since, suddenly heat seemed to be my worst enemy, when I never had a problem working or playing in it before. Where did these 100 lb weights come from that my arms are lugging around every day? Why am I sleeping so much then feeling half dead most of the day? Where did my energy go? What are those weird flashes of light that come and go? Why can't I even remember what I was saying in midsentence? I'm 40 not 95! Why do seemingly normal chores take on such a monumental feel? My most recent optic neuritis flare up was a few months ago btw. No problems with that yet, even in the heat. (WOW!)
Of course with the CCSVI model, just perhaps my brain was in a state of hypoxia (oxygen deprivation) and that might have something to do with the above. Which led me to contacting Dr. Dake's office, and was fortunate enough to squeeze in rather quickly due to scheduling. From time of learning about CCSVI to stent placement was about 3 weeks. Lightning fast in today's medical world! Just the luck of the draw is all but it all came together nicely thanks to some stellar staff with Dr. Dake, Alex and Angela.
What was the surgery like?
The surgery was fascinating, at least for me, I was mad I didn't get to see everything! It was definitely not what I had expected that's for sure, as the person being operated on is actually an active participant in the process! They give you a local anesthesia for the skin "down there", and sterilize everything then 2 seconds later they are in. Didn't feel a thing. The incision is so small they don't even stitch it afterwards! It goes in your (ahem) groin area, right about where the hip meets the leg. That's where the femoral artery is usually accessed in these types of procedures. They can go up into your brain from there if need be.
The surgery staff is brilliant, no-nonsense and very efficient. You have your own person that is tasked with checking on you since you can't talk or move for the procedure since that messes up the picture on the screen. The doctor has a bank of about 9 monitors in front of him. They slide some very thin long rods thru the incision (you don't feel it) then when it gets to the correct spot, they have already moved the stent "up the line" to its proper location, all under live X-ray, then when the key point is reached they "pop" the stent. This you feel very much like a tightening along with a Rice-Krispies sound in your ear. That's the stent "popping" open and as that is happening, they can literally watch your collateral veins that were formed dry up, as the blood flow is re-established through it's proper place. As for me personally, I had to have 4 stents put in so the process was about 2 hours or so, but most get 1-2, some 3 and rarely get 4. If you could see my jugular vein you would know why.
What were the risks?
Just normal operating risks as you would have with any surgical procedures. I wasn't worried about it in the least, more concerned about catching some bug there but rest assured they take their sterility very seriously in that room!
How much did it cost and will insurance cover this?
Everyone's insurance is different, some on Medicare with supplemental got off pretty cheap, but the big picture is around 100k for everything, including testing and such. My insurance does mostly 90/10 but Stanford is also in the Blue Shield network, my xrays and labs *should* be 100% so if that pays for the MRI then that alone is worth quite a bit. Remember the MRI is over 90 minutes!
In my free time in between appts I went to medical records on the 1st floor (pretty easy to find) and they made a 4 CD set of my MRI, it's HUGE. Very cool to look at, Dr. Dake developed the protocol for that MRI, and MRV.
Where do you go to have such a surgery done?
Well until the medical establishment gets on board here in a big big way, I wouldn't consider going anywhere else but Stanford. Dr. Dake invented the stents, and the venous stenting, he's been doing it a long long time, etc. etc.
This is not for your average backyard mechanic....
Do you see any improvements in your MS symptoms since the surgery?
Well, for that I would have to unequivocally say Y-E-S. But let me preface by saying that my real hope lies in those with the more disabling conditions, those with PPMS and SPMS who use canes, wheelchairs, can't get out of bed, function, all that nasty nasty stuff that robs them of their quality of life, they are the ones who hopefully will see the greatest benefit by this. For us Relapsing Remitting folk, with our fatigue and heat sensitivity and brain fog and for me also was starting to get balance issues and dropping a LOT of things with my fingers like they were losing sensitivity, well nearly all of that is mitigated quite a bit now.
I can hang out in the heat, no problem. I can think in the heat, no problem, I can function midday without feeling like the fatigue monster had jumped on my back for the rest of the day. I can carry on sentences, thoughts, just DO STUFF without having to write it down first so I won't forget. Instead of that feeling of "hurry up and get done what you have to do before you fall apart", I just plug away the same from morn til night! Refreshingly normal. Of course I expect to feel MUCH better once these blood thinners are over and done within the next month. I know the few days post-surgery I felt like a bull let out of a pen. Then I think the thinners kicked in so am a bit tired now but nothing like before, and definitely not fatigue because I can still THINK just fine!
What do you say to critics, including neurologists and doctors that say that this is a bunch of bunk and is offering false hope to vulnerable MS patients?
Hmmm, this is the one I agonized over all week on how to answer.
Be skeptical all you want, but as honest, critiquing scientists, who are trained from day one to adjust their POV based upon new evidence, at least take this new evidence into consideration.
Refusal to do that violates your sacred oath to do no harm. By not pursuing what could be some positive relief for some of your patients, you do them harm. After all, no surgeon ever says we have to do anything, they present the evidence and the patient decides.
My own Neuro was neither for nor against, and I was happy with that, they took the Zamboni paper and hopefully read it, and I'll see them later on this month. It's not my job to convince anyone of anything, just look at what it is saying very carefully and chew on it a bit.
Nobody is selling a magic elixir here made from pure gold (perhaps that is some of the problem, not a lifelong medication to sell), but I am CONVINCED that there are enough good doctors, sincere in their belief to provide their patients with the best medical care they can, that this entire new paradigm actually has a chance, should it prove efficacious.
When I meet someone that has MS for instance, I don't say, "Hey wow we found a great MS cure come check it out!". That would obviously be foolish. No, let's just look at everything we have so far, the preponderance of the evidence and you draw your own conclusions. That's what I did; you may come to a different conclusion. I respect that, but if you are an MS patient or someone who knows one, at LEAST keep tabs on this exciting new field of study into MS. There is more coming out this month from the European study that is farther out than us few from Stanford that are only months out.
Mark Miller (Stentee #24 or so I was told)
Published On: September 08, 2009