Neurologists' Responses to CCSVI By Julie Stachowiak, Ph.D.

[PointsNorth]

Poor misunderstood neurologists

Frequently, when the topic of chronic cerebrospinal venous insufficiency (CCSVI) comes up, it seems like that also becomes the time for berating neurologists. CCSVI fans often start with their own neuro's negative response to the whole CCSVI theory and how: 1) flabbergasted, 2) horrified, and/or angry that their patient would give credence to the whole idea, much less consider going for testing or treatment.

The anti-neurologist virtual drum-beating and sign-waving quickly moves into accusations that neurologists actually do not want to find a cure or even relief for people with MS, as they are: 1) in the pockets of Big Pharma, and/or 2) threatened with the idea that MS may actually be a vascular disease, not a neurological one, which would quickly deplete their patient base.

I certainly understand that many neurologists have less than stellar personalities (my own excluded), in fact, I have heard of some downright nasty ones. Combine that with an emotional topic that has yet to meet their definition of "science," and someone is going to be upset - probably both the patient and the doc.

However, I have also heard from a couple of neurologists who said that once they realized that their patient was going to get treated for CCSVI (venoplasty, often referred to as "Liberation Therapy"), they took a different stance. One doc said, "I wished her well and told her I would love to hear about her experience. I told her we could run her annual MRI after the procedure to see what that showed. That was months ago, and she hasn't been back."

So, let's hear from you - those of you who have actually had a conversation with your neurologist about CCSVI. What was his or her response to the CCSVI theory? Did you mention wanting treatment? If so, what response did you get to that? For those of you who have had treatment, have you been back to your neurologist? Were they interested in your progress? Tell us what is really happening out there in the exam rooms of the world - we all want to know the real story.

http://ms.about.com/b/2011/03/22/neurol ... -ccsvi.htm

my response:
Dear Dr. S. Wait a second. Neurologists aren't getting off the hook that easily. Especially the ones advising the MS Society/CIHR NOT to budge. One of my two neurologists has turned a corner (the one not connected to the local MS clinic.) He's cautiously optimistic and has agreed to work with me through my next intervention. FYI the 2.4million the MS Society keeps trumpeting wouldn't buy a single house in a tony neurologist neighbourhood. If I were a 'Society executive or an esteemed advisory board member i.e. neurologist, I'd be looking for another gig. Maybe a job at the CIHR??.

[scorpion]

If MS is a vascular disease why does anyone even care what neurologists think?

[PointsNorth]

Hi Scorp,

Because they think that MS is their baby and they're loathe to give it up without a fight!! I think things are changing for the better (see my other post). Kumbaya.

PN

[MarkW]

Do not be mislead by scorpion, an informed person knows:

-MS is a vascular and immune disease, not one or the other.

-MS is a disease of unknown origin.

Take these two ideas on board, then you may realise the complexity of MS.

MarkW

[scorpion]

Do not be mislead by scorpion, an informed person knows:

-MS is a vascular and immune disease, not one or the other.

-MS is a disease of unknown origin.

Take these two ideas on board, then you may realise the complexity of MS.

MarkW

Glad you got it all figured out MarkW. How anyone can be misled by the question I asked is kind of baffling. Seemed pretty straight forward to me. It just seems with all the testing/research taking place having the neurologists on board at this point seems like a non issue.

[Blaze]

Scorpion, the neurologists are significant because they make up the majority of the "expert" panels being formed federally and provincially in Canada to advise governments on CCSVI. Yet, these so-called expert panels have no vascular specialists or interventional radiologists.

The neurologists also seem to be driving the agenda of Canadian Colleges of Physicians and Surgeons on this.

My wish is that neurologists would be willing to work with the vascular surgeons and IRs to put the pieces of this puzzle together like Dr. Hubbard is doing.

[fogdweller]

Back on topic...what did YOUR neurologist say?

Mine surprised me. I had recently moved and therefore needed to find a new one in the area. the first one I went to was a disaster. First he said he had nevber head of CCSI, and then when I told him that the originator of the theory was Italian (gasp, a ferner) he said that, Oh yeah he knew what that must be all about. He was just like another charlaton he had heard of in Floriday that had a small bit of data and was trumeting a cure. His attitude was tht the proper condition for MS patients should be relatively hopeless and despondent, and anything else at this point must be a fraud. I never went back.

I found a neuroloist I liked, but before I did had had already gone to PI and had angiplasty for the CCSVI they found. (a mistake to just go on my own without local medical backup, but that is what I did). When I told my GP that I had done that he was quite curious in a positive way and said he admired my courage to go and get it done once I dediced that it was what I wanted to do.

I had a neurology appointment soon thereafter, and when I told my current neurologist, hw was very positive. He said that he had been reading about CCSVI and was quite interested in what they were finding out. He was not sold on the idea, and had what I consider a very healthy by open minded skepticism. (After all, anyone who claims to have "the answer" to MS is clearly over stating their position, even Zamboni.)

Anyway, with the exception of that one neurologist I mentioned, everyone I have talked to are caring and want to be helpful, and are scientifically open to new information. I think for the most part painting the neuros as hostile and antii PwMS is not accurate.

[1eye]

No, for the most part, if it were not for the misfortune of certain associations, the profession might be able to let go a little easier of their choke-hold on us. I personally probably don't count, because of my experiences in the care of a certain person who is a real MF. If they do care about us, why can they not let us alone?

The venoplasty is safe. Even though there are risks, it's the same kind of no-other-choice situation that a heart patient faces with angioplasty, and thousands of them are done every day. No, if neurologists are getting a bad image in Canada, they know exactly who to blame, and there are many elsewhere who have been just as recalcitrant.

They have also proved themselves capable of the most distasteful dealings and political manipulations, when all it accomplishes, is that it makes sure a greater number of us do not live to see the day we all know is coming.

It makes a lot of people wish there was a different bunch they could trust their brains to. It may even end up causing unnecessary suffering, when people are completely unwilling to look any farther, for better members of that profession to trust their brains to, some at great cost

[CureIous]

She's been reporting on this since the git go, very noncomittal either way, but her articles invariably lead to the drive by commentators which are then highlighted and used for future discussion, as if they represent the whole?

My neuro had no problem with it, I had no problem with my neuro, there are plenty of us both neuros, and patients, out there with similiar (if not better) stories, but that doesn't make good blog articles either, I wonder where she gets her information to arrive at such summations? From her own blog answers? From a questionnaire submitted to Dr's and patients? No, from answers on her own blog, which represent the smallest %'s of the whole, and I proffer, are not representative of the MS community to begin with.

Makes good blog, but not so good factual representation, if there can be such a thing when discussing patient/Dr. relationships.

My neuro took all my info, ran with the ball on his own, and as far as I know is staying on top of things, but I haven't seen him in so long it's hard to gauge, I will see him next month when my ins. comes back, and will predict right now, he will have the negative studies roll off the tongue in an instant, which is okay I suppose, but I'll be his own personal study, and I KNOW the very first question, which he asks every visit for the past 3 years, will be, "have you gone back to work yet?". He knows how difficult it was for me previously. Now, he will find out how incredibly well I am doing and on a consitent, day to day basis, week after week, month after month, and I will be happy to share this with him, as I've shared all my MRI's, MRV's, path reports, Dr. reports from Dake, etc etc. Maybe we'll do another EVP for kicks, so he can see if that is unchanged or better, the one post-op 6 months showed stable, and even that excited him. Since I've had no ON symptoms, no MS symptoms, and all that, it should show baseline or perhaps improvement. Def. no placebo involved in that test after all.

She's alright, but the noncomittal sideliners are also for the most part, out of touch with what is going on with the majority on a daily basis. She seriously, and I mean this with all sincerity, get off the blog and interact with real patients across the spectrum, and I mean specifically CCSVI patients, blog postings, internet ramblings, hardly a sturdy cross section.

She's heard from a "couple of neurologists?" I've talked to no less than 15 Dr's PERSONALLY since learning about this, just by word of mouth, friend of friend, you name it. Bloggers (and this is a blog people, not a medical advice column) exist to replicate themselves with audience participation schemes and questions that elicit answers, unfortunately, the negative experiences are sure to posted, with all the rest of us with not a lot of zing to report, aren't cruising the net looking for places to laud our experiences , it's just the nature of things.

Turning blogs into de facto thumbnail sketch scientific studies is a surefire way to get half the info, half right, half of the time, regardless of the original intentions, which with her, I am positive are nothing but pure.

[AlmostClever]

If MS is a vascular disease why does anyone even care what neurologists think?

Maybe this should have read:

"If MS is an autoimmune disease caused by or associated with CCSVI, a vascular disease, why does..."

Trick question, Scorp?

[Loobie]

My neuro (and my former neuro) were both good about it. You want to do it, feel free and let us know how it turns out. If I brought anything to my neuro that I thought we should discuss and he smarmily shut me down, I'd get a new neuro. I just don't like pompous people no matter what the topic.

[PointsNorth]

From personal experience I would say neurologists outside of the MS clinic might be a direction to go. Less group-think? Most if not all neuros have experience with MS?

PN

[Vivianne766]

If MS is a vascular disease why does anyone even care what neurologists think?

Maybe this should have read:

"If MS is an autoimmune disease caused by or associated with CCSVI, a vascular disease, why does..."

Trick question, Scorp?

I think the question is very clear.
The answer my friend ....