CCSVI concerns

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

Postby CureOrBust » Mon Mar 08, 2010 4:37 am

justjazz wrote:Not sure what drugs you are talking about, but I haven't heard of any deaths caused by the ABC treatment drugs. I can only comment that both copaxone and betaseron have been extremely effective for me. And I just want to reserve judgement on the procedure until I know its track record for success.
I am glad that both these work for you. I have not herd of any direct deaths from a crab, however, I do remember that when I was on Rebif, it carried a strong caution of patients being suicidal.
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Postby happy_canuck » Mon Mar 08, 2010 12:22 pm

CureOrBust wrote:I have not herd of any direct deaths from a crab, however, I do remember that when I was on Rebif, it carried a strong caution of patients being suicidal.


Cure, it sure does carry a suicide warning! I've been on Rebif 8 years and I was whisked away into psychological testing the minute I mentioned the vivid, death-focused dreams I was having 6 or so months after starting it. I was prescribed anti-depressants, but never took them because I was fairly confident I could separate dreams from reality. Those type of dreams stopped after a year or so, but I still would class my dreams as more vivid than pre-Rebif.
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Re: CCSVI concerns

Postby Lyon » Mon Mar 08, 2010 2:38 pm

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Last edited by Lyon on Mon Nov 21, 2011 6:12 pm, edited 1 time in total.
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Postby ozarkcanoer » Mon Mar 08, 2010 2:52 pm

justjazz,

I'm a jazz fan too !! We have people on this forum who run the spectrum from extremely skeptical to full of hope. If you are doing well on whatever MS drug you are taking then taking a look and see attitude is probably a good move for you. I am not booking a date for Poland but I do want to be tested so I have chosen the BNAC diagnostics route. I want a neuroradiologist in my hometown to work with me on any procedure and I have a superb neuroradiologist all lined up ! He will advise me after I get my testing and tell me what he thinks are the possible risks/ benefits of CCSVI liberation.

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Postby avantitech » Mon Mar 08, 2010 6:23 pm

JustJazz,
what are the risks that you are referring to?
Do you believe a venogram and ballooning is a high risk procedure?

Granted - insertion of jugular vein stents adds a higher risk, and it may well take quite a while to get mainstream medical & insurance companies to approve and support the technique, but it is manageable.

How many risks are you managing on a daily basis?
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Postby Billmeik » Mon Mar 08, 2010 7:32 pm

justjazz

coltrane played giant steps
charlie parker played donna lee
miles played so what
do you think these guys were always inside the changes?

what you say sounds like a conservative pov from a doctor. Doctors are people who, when you have a gun to your head, tell you to relax and that there is plenty of time.

sure we all want more science, we want to believe the science we're getting is coming from places that are well meaning, but really I think truth takes forever, and ccsvi is a story about patients taking power into their own hands. Yes its an act of deviance to get the scan, get fixed..but if everyone played on the changes the world would have no colour.
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Postby justjazz » Mon Mar 08, 2010 11:04 pm

Hey folks, sorry for stirring up so much dust. Maybe I should have posted in another thread. I'm just not gaga over this procedure, and I do trust in my Neurologist because he has been right regarding my treatment for over 10 years now. He is a research scientist as well, and I put my faith in his expertise over anectodal claims. I'm not saying some of you haven't been helped by this procedure, but I'm not jumping on board until the successes have been tested thoroughly and replicated by the medical and scientific community.
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Postby avantitech » Tue Mar 09, 2010 2:05 am

justjazz,
is your MS condition pretty stable and your symptoms under control?

If so it's understandable that you'd rather take less risk if possible, and that is Ok. I probably would feel the same. Progression and Loss are strong motivators.

Please don't feel as if you or your opinions are a problem. You are welcome.

What's the point of having a Forum if you can't be free to voice your concerns and discuss with others matters that are relevant to a whole group of people.
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Postby Donnchadh » Tue Mar 09, 2010 4:19 am

While I respect your right to wait for decades of double-blind studies to conclusively prove the validity of the CCSVI theory (and yes, it's just a theory now); there's an aspect you are overlooking.

Suppose Dr. Zamboni is correct that iron disposition is the actual initiator of the MS sequence of symptoms, then every day you delay treatment you are needlessly accumulating more harmful iron in the brain and spinal cord.

Personally, I have suffered with PPMS for twenty years, and at my age I don't have the luxury of waiting. CCSVI diagnostics are completely safe, and an expert interventional radiologist should be able to do the procedure with minimal risk. I don't see much of a downside, except maybe for the cost.

But how do you put a value on the possibility of living a more normal life versus knowing that you will continue to worsen on a daily basis?

Conventional neurologist's offer no hope for my case.

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treatment or not

Postby LSITC » Tue Mar 09, 2010 6:34 am

Justjazz

I understand your reluctance to have anything done - it is absolutely your choice. Let me add my voice to the others though.

I have just beaten cancer and have MS as well . I live in England where NOTHING is being done to date. Would I jump at a chance of having a small procedure done that could help the quality of my life however long that may be? Darn right I would.

Having heard that you have to pay two weeks in advance for treatment in Poland i am not happy about the ethic there.

So I will wait until it is available in the UK or hopefully USA

Fight the fight it is your right

:P :P
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Looking forward to Stanford clinical trials...

Postby Lgleaton » Tue Mar 09, 2010 7:15 am

I agree with everyone here! :D
Yes, it's early days, and clinical trials can't happen fast enough! My understanding is that Dr. Dake at Stanford stopped the procedure in order to begin clinical trials. The emails I have from his office (form letters - not personal) indicate that those trials will begin some time this year. I can hardly wait! I would do anything to be in those trials. (Are you reading this, Dr. Dake?) My experiences have led me to believe that CCSVI is a much better explanation for my issues than anything auto-immune. My neuro is a sweetheart and doing what he knows best. He is open to what comes of these trials and supports me becoming a subject if I can. Bring it, Dr. Dake!
Lisa G
DX RRMS 11/02<br />RX Copaxone 12/02 - 3/10<div>Elevated head of bed 3/10 - present</div>
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Postby Cece » Tue Mar 09, 2010 9:45 am

justjazz wrote:...I'm not jumping on board until the successes have been tested thoroughly and replicated by the medical and scientific community.


Makes sense enough to me...we all have to make our individual choices when it comes to health, risk, and experimental surgical procedures.

On the other hand, angioplasty has a long track record as an FDA approved treatment. There is also very little risk in getting the imaging done, to see if one is among the 56% or 65% or 80% or 95% or whatever the number ends up being of MSers with CCSVI.

You asked early on why Dr. Dake would shut down over a death if it were unrelated. There was also the migration of a stent to the heart, in another patient, resulting in emergency open heart surgery. That occurrence was undeniably directly related to the procedure.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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be careful

Postby christophelux » Tue Mar 09, 2010 4:08 pm

CCSVI debate is quite difficult but I think some basics should be reminded :

1 - actual first line treatments are working and are safe. It has been proved by rigorous blind studies that they have a efficiency rate of 30 % and I think no one can really seriously challenge it. And this is true for the long term, new study just released shows that after 15 years copaxone treatment results are still there. And no serious long term effects has ever been reported with interferon and copaxone.

2 - CCSVI ballooning is safe, it is a basic operation. The question of efficiency is open as some have improvements, other not; the only scientific study done has been made by Zamboni and he recognises himself that it needs to be double checked.

3 - Stenting is not safe at all. Dake procedures were not stopped because the guy wanted to start scientific study, it has been forced to stop for medical reasons by FDA as he was stenting systematically without much care and a serious accident occurs when stent migrated to the heart. Vascular surgeons insist that stenting is not normally for veins because they are too fragile (thin, smooth,...) to support a stent. Zamboni himself insists on this. Franceschi, the french CCSVI specialist, the same.

Conclusion : I understand that if your treatment is not working, if MS has already a deep impact on you, if you have a clear CCSVI diagnostic - stenoses and not just small narrowing-, you want to have the liberation procedure. But I would - purely personal of course- really refrain from stenting at this point of time. If it restenosed maybe it could be an option but first time seems really aggressive. And the fact is that Poland Simka, the main operation centre in activity, is stenting quite often and that should make people think twice about this.
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Postby justjazz » Tue Mar 09, 2010 5:15 pm

Donnchadh wrote:While I respect your right to wait for decades of double-blind studies to conclusively prove the validity of the CCSVI theory (and yes, it's just a theory now); there's an aspect you are overlooking.

In your opinion bud. I know many folks with relaspse-remitting ms (as is mine) that are functioning just fine and some well into their 70's. Please don't presume to tell me what I'm "overlooking." It's just that arrogance that works against the supporters of CCSVI.

I can sympathsize with your situation. I, however, am not getting worse each day. I am completely stable and in a lot better shape than a few years ago thanks to existing medications.
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Re: be careful

Postby euphoniaa » Tue Mar 09, 2010 5:39 pm

christophelux wrote:
1 - actual first line treatments are working and are safe... And no serious long term effects has ever been reported with interferon and copaxone.



Holy crap!! Where in the world did you come up with such an outrageous statement? Even aspirin can cause "long term effects." I've read tons of reports of the use of interferon beta for MS occasionally leading to liver failure and liver transplants. Google it.

It really upsets me when the MS meds are portrayed as practically harmless. They're very powerful, potentially dangerous drugs, with side effects that rival my worst MS episodes. :( "Effective" is pretty vague - there's no way to test that on any individual. If I had been taking a "first line treatment" for the last 20 years, I'd be one of their most magnificent success stories. But I haven't.

Sorry, for the grouchy mood... I'm sitting here with a cold that's finally beginning to kick my ass tonight. I did manage a whole day of work today before I gave in to it, however - I don't take MS meds, so I'm not already sick when I get hit with an illness. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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