has anyone had cssvi treatment for more than 2yrs?

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

Postby Cece » Wed May 11, 2011 4:43 pm

They don't call it "Innovative radiology" for nothing.... :)

Some of the IRs are more innovative than others. This is a good thing or a bad thing depending on the innovation. I value the innovativeness, whether it's poor man cutting balloons or rendez-vous procedures or using IVUS in ways it's not been used before.
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Postby bruce123 » Thu May 12, 2011 5:43 am

From reports, the 1/3, 1/3, 1/3 was off from the beginning, alluding to a 2/3 chance of some type of improvement, which hasn't been evident in the people I know who had treatment.

Dr. Siskin says the 1/3 ratios are still valid but your personal experience shows otherwise. I would have to believe Dr. Siskin since he has done over 500 procedures. This is the problem that we all suffer from. We make our decisions based on incomplete information. This is why waiting for the results of controlled studies is important.

Most of us base our decisions on what we learn here on TIMS and maybe Facebook, etc. I think the majority of people who have been treated for CCSVI are not active members here on TIMS. The people who post here and on Facebook are a particular type of person and that skews our opinions and beliefs. The only way to really know what is going on is to gather real statistical data.

That being said, my wife and I decided to take the risk and proceed without the results of proper studies but we knew that there were no guarantees and that the doctors didn't know much more than we did.
To each his own.

Bruce.
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Postby cheerleader » Thu May 12, 2011 10:03 am

Dr. Zamboni wrote about improvements at 18 months in those he treated endovascularly for CCSVI, and I have to say....his results have been pretty consistantly seen around the world.

And Bruce, this was a proper study.

Restenosis occurs about 45% in the jugulars, and the best outcome for those with RRMS. Quality of Life improvements for progressive patients, but he did not report miracles. And that's hard to hear, but the truth. There is no cure for venous stroke.

Here's Dr. Zamboni's original research with my comments in parenthesis.

Results: Outpatient endovascular treatment of CCSVI was feasible, with a minor and negligible complication rate. (This has also been shown by Dr. Siskin and Dr. Simka's published research)

Postoperative venous pressure was significantly lower in the IJVs and AZY (P < .001). The risk of restenosis was higher in the IJVs compared with the AZY (patency rate: IJV, 53%; AZY, 96%; odds ratio, 16; 95% confidence interval, 3.5-72.5; P < .0001). (We continue to see the problem of jugular restenosis in about half the cases)

CCSVI endovascular treatment significantly improved MS clinical outcome measures, especially in the RR group: the rate of relapse-free patients changed from 27% to 50% postoperatively (P < .001) and of MR Gad lesionsfrom 50% to 12% (P < .0001).

The Multiple Sclerosis Functional Composite at 1 year improved significantly in RR patients (P < .008) but not in PP or SP. Physical QOL improved significantly in RR (P < .01) and in PP patients
(P < .03), with a positive trend in SP (P < .08). Mental QOL showed significant improvement in RR (P < .003) and in PP (P < .01), but not in SP.
(the RRMS people with fatigue, heat intolerence and cog fog show the best results. Dr. Dake speaks and wrote about this. This is my husband.)

http://www.ctv.ca/generic/WebSpecials/p ... _final.pdf

We discussed this paper at length on this site, and on the Facebook page I started. I really don't think we can blame others for not consulting research. It was Dr. Zamboni's paper I took to Stanford. A local university, where my husband could be tested and treated as needed. This is what Dr. Zamboni stressed...no medical tourism, staying close to home, working with doctors who understood venous malformations.

He has been right since the beginning,

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby shucks » Thu May 12, 2011 5:54 pm

What were your wife's results, bruce? How about yours cheer? i really wish Dr. S would chime in again as well.


Thanks
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Postby drsclafani » Thu May 12, 2011 10:26 pm

shucks wrote:What were your wife's results, bruce? How about yours cheer? i really wish Dr. S would chime in again as well.


Thanks


not sure exactly what you are asking, shucks.

i cannot really give you a good sense yet of the odds of significant improvements in neurological symtpoms. i think that if the procedure is done properly, then the majority of patients will have reduction in fatigue. but until we stratify patients into disease grades we cannot make blacket statements of 1/3,1/3,1/3. If one's practice treated mostly PPMS with EDSS of 6 , i do not think we would risk lives to treat

staying home is great if you have a world class interventionalist in your backyard, but some of the docs doing this shouldnt. So staying home might be a bad thing.
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Postby se1956 » Thu May 12, 2011 11:54 pm

If you change
Minimum number of treatments included
to 6
on this site :

http://www.ccsvi-tracking.com/index_timeline.php#menu

you will reach 12 months.

But the values for > 8-9 months are less reliable.

Overall this graph shows a positive trend.

I think the future may show that (multiple) treatments may stop/slow down the disease. For spms and ppms this would be good but no miracle.

R.
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Miracles

Postby fiddler » Fri May 13, 2011 9:56 am

As an SPMSer, I take my miracles where I can get them. One year after treatment, my fatigue remains much better, balance much better, mobility a bit better, bladder quite a bit better, manual dexterity slightly better. Given my trajectory before treatment, this change in my quality of life and outlook is pretty darn wonderful. It's not a miracle because it just makes common sense that improving drainage from the brain will help at least some symptoms. But guess what: if there was a drug that made this much difference to my life, it would be marketed as a miracle drug.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby shucks » Fri May 13, 2011 11:57 am

I thought you guys would be beating up the new guy starting a new post, but I am learning a ton.

Doc,

How many people over what lenght of time do you think do you need to have treated to say whether or not the improvements last longer for RR, PP, SP?
Not to beat a horse, but have you heard anything of CCSVI and devics?

My diagnosis is one or the other and the guy I saw said it could be either, so it piques my interest.

THanks.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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