This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. Zamboni told us at the McMasters meeting a few months ago that pathology of the veins did not show inflammation.

i can do sarcasm too, you know

when ultrasound is done in the sitting or standing position, the diameter of the vein collapses significantly. There may be some diameter and there may be some flow. that flow might be retrograde up the vein, to and fro or just stagnant

i would not put a percentage on it

If I had to choose, as risk of the procedure, between incision site infection and progressive multifocal leukoencephalopathy, I think I would take the former anytime.
The problem with the informed consents is that they are written by the malpractice insurance lawyers and include any possible complication under the sky; They become so long and convoluted that the patients ends up signing them quickly trusting that the reason their surgeon proposed the procedure is because the benefit outweigh the risk in their situation.
Also there is always a risk in not doing anything.
If I am ambulatory now and I become wheelchair bound waiting for the procedure I think this would be unacceptlable for anybody.

Have you found it difficult to recruit neurologists? From a patient perspective, when we bring up CCSVI to our neurologists, the conversation does not go well.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Dr. S-

The docs in Poland discovered 95% of their MS patients had ccsvi stenosis. Was your experience similar with the folks you've treated?

Hello Dr Sclafani
I e-mailed my request and interest in CCSVI more than 3 weeks a go to e-mail address that you posted but still haven't heard back yet.

You wanted us to contact you directly if we do not receive any reply , may I have any other phone# or email address to contact you directly?

Tanks in advance,

I have read that the people to most benefit the procedure are people in the early stages of MS disease. These same people are the ones with the most difficult to diagnose or measure symptoms in a repeatable way that is accepted as caused by MS. So far it seems that the study group of MSers have progressed to a time in their disease that benefits are not easily identified because of the degree of damage to their nervous system. We need to get early stage people into the studies some how. We need people who have been diagnosed early with definite MS.
My thoughts are that we will have to define which symptoms can be used as the most measurable and have enough importance to the researchers or people who will allow treatment to continue. To be able to measure vision issues is one possible that has great impact on quality of life that would be impressive to a governing body.
Many of the early symptoms get discounted and when the disease has progressed to for instance wheel chair bound a person has too much unrepairable damage and the vascular treatment can not be seen to be helping in the short term we have observed so far.
This catch 22 situation is where we as MSers need to focus our collective energy. What are the most measurable early stage symptoms that we can list for the good Drs to guide us through this next blip? So that treatment can get back on track! There are symptoms that people have had improve due to there treatment, can these be measured in a way that has credibility?
Vision, strength, bladder,fatigue,cognitive,heat intolerance, the easier to measure the better and maybe not too many?

all have been skeptical
but the people who have joined me a great

no. It has been 100%. But i am sure someone will be normal sometime

Dr Sclafani, is there anything we as a group can do to help you?

Brave, I've responded to all inquiries to ccsviliberation@gmail.com within three days. Did you perhaps make a mistake with the email address? (I'm not perfect either; what I HAVEN'T kept on top of is my PM's here and, as Nunzio pointed out two days ago, I didn't confirm receipt of the form when I got it for the first few days in early March, when I got Nunzio's, but have ever since.)

This is awesome! can you tell us the number of patients you have already treated? It would be nice to have some perspective on numbers.
Thanks!

Hi Holly! Good to see you on here...

Denise

Holly, you have only made 3 posts, DrSclafani has 161, you have some catching up to do!

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I think we've been keeping Holly very busy! lol