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by mrhodes40
Sun May 16, 2010 8:29 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1847203

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...
by mrhodes40
Mon May 10, 2010 8:09 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: How can we design a trial to test efficacy of the surgery?
Replies: 47
Views: 7395

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...
by mrhodes40
Mon May 10, 2010 4:28 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1847203

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" be corrected by ven...
by mrhodes40
Fri May 07, 2010 9:40 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1847203

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 ...
by mrhodes40
Fri May 07, 2010 8:58 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: looking for someone liberated and still getting worse
Replies: 42
Views: 6991

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 Zamboni has asked f...
by mrhodes40
Fri May 07, 2010 9:49 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: looking for someone liberated and still getting worse
Replies: 42
Views: 6991

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...
by mrhodes40
Wed Apr 21, 2010 6:50 am
Forum: Regimens
Topic: Marie's Stents CCSVI
Replies: 180
Views: 42112

Thanks Cure, I agree.
by mrhodes40
Wed Mar 31, 2010 7:04 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: An Article from 2003- questioning MS as autoimmune
Replies: 14
Views: 3532

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...
by mrhodes40
Thu Mar 25, 2010 9:34 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: A CCSVI Patient Log: All About Steve
Replies: 145
Views: 32670

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. :D 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 :idea:
by mrhodes40
Wed Mar 10, 2010 1:35 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Valve Regeneration as a Vein Angioplasty ISSUE
Replies: 42
Views: 12004

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 ...
by mrhodes40
Wed Mar 03, 2010 4:49 pm
Forum: Regimens
Topic: Marie's Stents CCSVI
Replies: 180
Views: 42112

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...
by mrhodes40
Sat Feb 20, 2010 8:10 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Stanford Relapses?
Replies: 39
Views: 10168

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...
by mrhodes40
Tue Jan 26, 2010 9:53 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI RESEARCH here
Replies: 190
Views: 141621

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.
by mrhodes40
Tue Jan 26, 2010 9:45 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: News from Dr. Zamboni- CCSVI lesions congenital
Replies: 40
Views: 10752

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

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

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
by mrhodes40
Sun Jan 24, 2010 11:01 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Second opinion
Replies: 26
Views: 7625

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. :D

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