CCSVI skeptics

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI skeptics

Postby zap » Mon May 18, 2009 8:17 am

I was curious to see what my neurologist would say about all this - here is his response to my asking for any leads for an MRV scan:

I am afraid I cannot support this. I have read the material and find it totally implausible. Doing MRV is not a problem but there are significant costs assoicated with it and absolutely no persuasive evidence that is would be beneficial. There are significant risks associated with placement of venous stents and I cannot allow myself to be associated with it. I am happy to refer you to another MS expert for another opinion on this if you wish.


Anyone other skeptical responses to add? Wish mine had been more detailed but he's always pretty brief, so no surprise.[/quote]
Last edited by zap on Tue May 19, 2009 11:50 am, edited 1 time in total.
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Postby peekaboo » Mon May 18, 2009 8:32 am

Zap are you going to stanford? i can't remember. may be it will be up to the guinea pigs to shout out?

Your neuro said there are risks w/ venous stents...did he elaborate? oops you said he was brief. maybe he was so brief because he didn't really have all the facts and was trying to save face :(


I do not believe there are significant costs...cost more for crabs rx!
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Postby LR1234 » Mon May 18, 2009 8:38 am

I think the best way to act with the neuros is to be quite blase about it all.

Be like...it probably is just a theory that will be proved wrong later and you are not a person that believes all the hype etc, however you would be interested in having it done as it is not invasive and there are no risks involved. What harm could it do just to check?? It would be silly to totally rule something out before checking.

If you go in there trying to "sell" the idea you will most definately be met with defensive responses. Dr's don't like being told what to do by their patients! (a personal observation)

So ask them to let you have the MRV and that you understand the likelihood is nothing will be found. (once they have done it and found something then they might be more open to it all!!!)
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Postby robbie » Mon May 18, 2009 1:42 pm

I am afraid I cannot support this. I have read the material and find it totally implausible. Doing MRV is not a problem but there are significant costs assoicated with it and absolutely no persuasive evidence that is would be beneficial. There are significant risks associated with placement of venous stents and I cannot allow myself to be associated with it. I am happy to refer you to another MS expert for another opinion on this if you wish.


Pretty much got the same response from my neuro last week, I almost felt embarrassed to ask thinking that she would be wondering do you really believe that the medical community could have over looked this kind of thing, but with new technology you never know, then you think there are no kick backs yet or golf trips to the Bahamas paid for via CRAB drugs and their makers. I really believe this could be something but like anything else regarding ms only time will tell.
It’s hard to teach an old dog new tricks
Had ms for over 19 years now.
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Postby notasperfectasyou » Mon May 18, 2009 1:50 pm

Surprise, Surprise, Surprise

I've been down this road. I can promise you, if it's not conventional autoimmune theory, you have a very, very, very low chance of getting a neuro to be open to this or other non-conforming ideas.

Been there, done that.
Ken
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Postby cheerleader » Mon May 18, 2009 1:55 pm

We were lectured by our GP when Jeff went in for blood tests ordered by Dr. Dake. She was very angry that Jeff went ahead with this procedure without consulting his neuro. When I asked her if she had read the piles of research I gave her in January...well, no, she didn't have time. And the neuro hadn't read it either. Yet they both somehow decided CCSVI was impossible.

As Jeff said this morning, "It is my body. It is my future and my health. And I get to decide what to do with it."
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby zap » Mon May 18, 2009 1:58 pm

peekaboo wrote:Zap are you going to stanford? i can't remember. may be it will be up to the guinea pigs to shout out?


I was hoping to get tests done locally, and decide if I should take a trip based on what was found in them ...
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Postby robbie » Mon May 18, 2009 2:52 pm

"It is my body. It is my future and my health. And I get to decide what to do with it."

amen Jeff
Had ms for over 19 years now.
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Postby Sharon » Mon May 18, 2009 3:12 pm

I have had the same response from two very well known neuros. I consider one of the neuros a friend - he speaks all over the world about MS - gets paid by the big pharma companies. He told me good luck. My own neuro has yet to get back to me and it has been three weeks.

All this proves to me once again, how important it is that you be your own patient advocate. Ditto to Jeff's remark:
It is my body. It is my future and my health. And I get to decide what to do with it."

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Postby peekaboo » Mon May 18, 2009 3:47 pm

i didn't even bother telling either my GP or neuro...I know the two are old school...i will probably get flack from them but if i show signs of getting better I will just stick my tongue out :p
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Postby Loobie » Mon May 18, 2009 3:56 pm

To me anyway, the mark of a truly wise man is not knowing everything. It's knowing that you DON'T know everything but keep your mind open to learning at all times in your life. I think we all fall into that trap a little bit in terms of paradigms. I, however, totally agree with Jeff. It's how I feel about politics. Basically, "hey bud, don't forget whose paying your freakin' salary." My neuro. that I've had for the whole time is finding out tomorrow, and my new "insurance required me to change" neuro. has already been told (via the fax machine) what I'm doing. When I go in on wednesday I'm very interested to see what his/her reaction is. Hell, I don't even know the doctors' gender! I think we all know so much about MS that we are going to do what we want to try BECAUSE it is us. When you think about it; an unknown disease with and unknown cause and drugs that have an unknown mechanism of action (well Tysabri anyway) and we have just let them go. It really has been blind faith.........until now. I definitely feel very empowered doing this and not giving a flying fig about what the neurologists think. I mean it's so benign, so you know their reactions are just from having their all powerful role challenged. No one likes their power taken away. If they were in possesion of a higher intellect they would say to do it if you choose, it can't hurt. Then they can say they don't think it will work, but to say they already know it won't work. My first question if I get that is "prove it".
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Postby sou » Mon May 18, 2009 4:11 pm

Hi.

Today I met my local vascular surgeon. He knew Zamboni. Same age, same specialty and he studied in Italy.

I said that CCSVI is not possible to have anything to do with MS and I was treated like a hypochondriac. He said that only my azygos should be looked because a stenosis there could create a blood clot and take my life.

At the end he told me: "You are a computer expert, so young, you have a life ahead! Don't waste your time being afraid that your life is in danger!"

I couldn't tell him that I am not afraid about my life but I have reason to believe that I have reflux in my IJVs or VVs and this damages my myelin. His opinion is that reflux is not a problem at all, because the body will take care of that. But what is the cost of it?

Anyway, he did hand me a referal for ultrasounds for Zamboni's sake! He somehow likes to see me as a guinea pig.

My conclusion: Perhaps acting like an hypochondriac could do the trick for the skeptics!

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Lyon » Mon May 18, 2009 4:28 pm

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Postby peekaboo » Mon May 18, 2009 4:31 pm

oh sou...so sorry to hear the "verbal abuse" you had to go thru..

you say ultrasounds...what kind? doppler or both the MRV & doppler? I wonder once you get your results what he will do? do you know/have access to any other vascular doctors? I would ask for a disc or copies of the ultrasounds so you can take them wherever you go.

Holly

additonal comment: what is the % of venous clots that would create a hazard? from what i understand veins don't get clogged..arteries do? Is this not correct?
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Postby patientx » Mon May 18, 2009 7:13 pm

Loobie wrote:When you think about it; an unknown disease with and unknown cause and drugs that have an unknown mechanism of action (well Tysabri anyway) and we have just let them go. It really has been blind


You know, Lew, that's pretty much what I've been thinking lately. To these neuro's who dismiss this idea out-of-hand, I'd like to say, "ok, then, what is the cause/cure for MS? No idea? Then what do you suggest for slowing/stopping the progression?"

Unfortunately, MS has almost become a little cottage industry. Neuros now have a standard list of tests they can order (MRI, LP, VEP, etc). And if it comes back that you have MS, well we have FDA-approved meds that cost an arm and a leg and do very little. And we have meds we can prescribe for symptoms. And at every step, they get a nice little fee.

The funny thing is that, while I believe the CCSVI connection to MS is plausible, I've been following this with somewhat of a skeptical eye. But the arrogance of neuros to just dismiss this really gets to me. It seems they're pretty satisfied with the status quo - of course they don't have MS.
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