This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Dr Sclafani!! thanks for being here and asking for participation, it is fun to be part of the solution. To test this the results of PTA how about testing mean transit time before and after treatment? After all, the neuros have been defining MS in terms of immunology for decades 'MS is an inflamma...

He thought that the only way to do it, and how they've done things in the past, is to have an independent 3rd party observer examine patients The campath trials have been done this way-- http://www.ncbi.nlm.nih.gov/pubmed/18946064 --334 patients with EDSS less than 3 in open label treatment of Camp...

cece wrote I would propose a venogram for the control group and endovascular treatment for the treatment group. Forgive me for butting in here but would this not result in some "treatment" in the control group? IF a control had a membranous obstruction could it not "accidentally"...

the problem with a blinded study is how does one keep a patient in the dark about whether they are treated or not. Do we do all procedures under general anesthesia to remove the astute MSer from the equation? Unethical and dangerous). Very difficult. it will take a lot of discussion Hi Dr Sclafani ...

Yeah OC! But I do hope that doctors like Dr Sclafani are released to perform the procedure so they can also contribute all their amazing brains to this whole problem. Anecdotal reports of "I got better" or "I got worse" will not convince any neuros. Trials and studies are what Dr...

Cece- I see after post we are on the same page :) , though I am wordier--per usual :oops: Dr. Sclafani has said that he would like to go back and recheck the azygos of the first few people he treated, knowing what he knows now. He told a story of how he took a scan to Dr Z who pointed out a very int...

Thanks Cure, I agree.

Nice Cheer! Behan and Chaudhuri often write together and are people whose work I enjoy keeping track of. There are some talented researchers who have long ago questioned the AI paradigm. I have long followed the work of Prineas, Barnett, Chaudhuri, and Behan...these people are some who have question...

I am so happy for Steve. How wonderful after the winter of cold and flu he has been through. Mowing the grass is no small feat. awsome! I would not attempt it myself.

And wow, 45 YEARS of MS! holy cow, I thought I was a veteran at 19....

I think a reunion thread is a nice idea

Hi Rici I have been wondering how you are, thanks for the update. SO Dr Schelling believes that ballooning or destroying the valve if it seems necessary (ie an upside down valve) in the lower jugular area results in more problems for the MS brain if it should not restore normal valve function? Do i ...

Nearly 10 months. Wow. I am nearly never here any more. Please forgive me for the lack of response, and thank you so much for the kind thoughts and good wishes dialed in and CHRv and everyone! I will repost my second opinion post from the CCSVI thread so I can comment on it and keep track of this he...

I am doing well too. I am still trying to get over the nerve issue I was person #2 so my stent is big. My physical therapist and physiatrist (rehab MD) both note the profound difference in flexor spasm levels. I have no change in mobility level I still walk with a cane but I am working now. My patte...

I added a link to Dr B Lee's new paper on venous malformation in the replicating studies section....page one post 2 of this thread.

The big links are so numerous now it is hard to keep them organized...that seemed the best location for the new information. Any better ideas let me know.

Lord yes it has to go in for sure---

no not here much at all just a quick guilty peek once in a while

This is an absolutely incredibly GREAT development!
If we have a DRG code for a truncular venous malformation this will make payment more sure.
marie

The only "problem" with performing the ultrasound on you, is that you have been "fixed", and hopefully he wont find any failures on your ultrasound. But I certainly think its a damn good follow up to surgery.

I am doing it for science and for all of you.