This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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.

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.


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
dual stents placed 5/09
CCSVI in MS

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


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

Who is John Galt?

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.

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.

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

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

Who is John Galt?