This Is MS Multiple Sclerosis Community: Knowledge & Support

Thank you, Dr S. I was worried beyond those reasons -- I wondered if you were implying there was some direct medical reason within the procedure itself that was a problem.

Those accepting this offer of help do so agreeing to the two-treament strategy, and I imagine all have different reasons for their decision. Due to the possibility of pain, which, for me, can cause an exacerbation with new symptoms, my pain management doctor dismissed concerns of a second "shopping trip" so that I can have time to recover from pain, if needed.

I know of other reasons people are opting for this strategy, and like most things in life, strategies can change over time. Also, doctors have been bringing back patients for a second "shopping trip" for many reasons, and the two-treatment strategy is just a different manifestation of more shopping which allows the doctor more time to assess the change, if any, in vein physiology from the first procedure and more time to consider more options, especially for the more difficult ballooning situations, without the pressure of time constraints due to patients' locked-in travel arrangements.

This reminds me of the $650 IVUS question -- is the cost worth the benefit to the patient: Would I pay the extra money for an IVUS catheter if it gives my doctor a better chance at finding all problems? Would I make a return trip if doing so gives my doctor time to consult with other doctors about my case?
Yes and Yes. Especially if I trust my doctor.

Are we talking about never-done-before diameters? Or just never-done-before in CCSVI-stricken veins?

But the RCTs aren't waiting, are they?

Will the International Society of Neurovascular Diseases be the one to help focus these efforts? Is it through this society that the ideal randomized multicenter trial with trained investigators who have completed many procedures could be funded?

Agreed. I have a Panasonic DVR. If I record in EP mode, then I can get 8 hours of video on one 4.7 GB DVD-R disc. The quality is not HD to be certain, but it's nearly the same as 480i and still watchable without getting annoyed.

NHE

Dr. S:

It seems there have been cases of stenting the ascending lumbar veins ...
any thoughts as to if stenting the lumbars may be feasible? or even useful in the case of CCSVI ...
http://www.ncbi.nlm.nih.gov/pubmed/17012012

Asked previously, but it was the day of the symposium and I think think it might have been missed. There did seem to be some interest and also others that's experienced the same type of relief. In fact, someone started another thread regarding it if you'd like to relay your own experience:

Dr. S:
Is it possible to have veins temporarily open on their own for an unknown reason which then relieves symptoms?

Here is our story:
About two years ago, on a typical Saturday afternoon, my husband (RRMS for about 20 years) had been sitting for a short while when he noticed for some reason his numbness in his legs felt much better. I was in the room with him and it was somewhat eery, because he had this confused look on his face. He shook his legs, stood up and walked around to experience the feeling of normalcy return to his lower legs. He walked around the house, went up and down the stairs (which he could do before, but he was trying to "test" things out) all very confused about what he was feeling. At the time, he told me that his legs felt normal. It gave me goosebumps watching him experience it. It was shortlived though, and within an hour, as I remember, he was back to 'his' normal.

Could his veins somehow have moved or twisted so that bloodflow was able to make it through? It was a very "out of body" experience for him. Anyone else ever experience a drastic temporary improvement like this before?

Thanks Dr. S - You're the best !

Dear dr.,

i'm PPMS, Dg.2004.g, last five months in a wheelchair. The lumbar venography is not doing.
The groin was up from right leg. They not mentioned study about azygous by venography and angioplasty was not done there.

With respect, A.

Lifeisgood,

Re short term improvements: My only symptom is that for the last ten years, my walking has deteriorated. Now I wall-walk around the house and for the last five years, I use a scooter when I go out.

Several times I have suddenly been able to walk perfectly! Perfect balance, easy gait, swinging my arms -- it all worked. But it never lasted more than a few minutes. I never knew why it came or went.

Maybe an explanation for this would be something like a valve that sticks? When it temporarily works, so does everything else?

ok, will let you know how big the files will be once medical illustrations sends it back to me, hopefully this week!!!!!

The founders of the new society met at Salvatore Sclafani's lovely home in a pretty part of Brooklyn overlooking a park. Salvatore was wearing a paint-splattered t-shirt and a wool knit skull cap on his head. The next day he was wearing a suit and I almost didn't recognize him. The rest of the "founding fathers" were all there or on the phone. Mark Haacke whom I already knew was preoccupied with the phone connections to Zamboni in Italy and Schelling in Austria and BB Lee at Georgetown and Zahed in Detroit. Mark Godley is the anesthesiologist who runs the Falls Creek private hospital in Vancouver. He was very friendly and helpful and was charged with keeping the minutes. The two Italian neurologists Fabrizio Salvi and Ilaria Bartolomei who work closely with Zamboni were also there and were friendly but spoke little. Robert Zivadinov I had met briefly in Hamiton so I recognized him. As I remembered he has a gruff manner, but over the next two hours I came to respect his judgement and admire his courage. He has been a leading big pharma researcher of the various MS immunosuppressants and since he began studying CCSVI big pharma has been shunning him. Mark led us efficiently thru the creation of the new Society, the International Society for Neurovascular Disease, I am the treasurer, Zamboni the first president, Zavidinov the next, Sandy McDonald, Mike Dake, Ashton Ambry Franz Schelling, and several others will be the founding officers. It felt like I was witnessing John Adams and Thomas Jefferson at the declaration of independence.

The next day was Sal's conference for interventional radiologists. I spoke about fMRI as a measure of venous drainage from the cerebral cortex. Haacke gave his usual exhaustive review of MR in MS. Salvi gave a thorough summary of the status of MS research. Sclafani was clearly the grandfather of the IRs and kept the meeting moving. Sinan from Kuwait, Petrov from Bulgaria, Sisken from Albany and another IR whom I didn't recognize summarized their experience doing venoplasties. This was what the audience came for and it was a very animated discussion of catheter strategies, balloon sizes and styles ("cutting" vs "kissing") and pressures and how aggressive to be. Petrov does stents in half his patients and is also more aggressive about treating the upper jugular. Michelle Brown gave a short talk about "patient advocacy" and announced Joan Beal's "CCSVI Alliance." Another advocacy group was also there "Angioplasty for All" championed by Diana Price although she was not there, accompanied by their attorney Edward Conway; they plan a class action law suit in Ottawa. There were also a few neurologists in the audience but no hostile questions from them. In fact no questions at all. The general consensus was that there would be a rapid learning curve on the best techniques to open the veins and keep them open, but that CCSVI was the most important advance in MS research in 50 years, maybe ever. I began my talk by saying "I'm a neurologist and for the first time am a bit embarrassed about it."
copied and pasted from David's entry on PLM

David Hubbard MD

My husband and I ...felt so privlleged to meet you and to be able to witness the coming together of like minds on Monday.We could sense your frustration in wanting to get 'Back in the Saddle' and sincerely hope that you will be up and running again soon.