DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

TEE for semi-invasive azygos imaging

Postby drbart » Sun Aug 01, 2010 6:06 pm

How about using TEE for imaging the azygos?

Might require a sedative, but you don't have the issues of blood, thinning, hyper-sterility, or post-op treatment.
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Postby Cece » Sun Aug 01, 2010 6:07 pm

The thread has been hot this week!

Michelle, I am watching your speech now, so far so amazing!

JohnJoseph wrote:Are there pneumatic driven, i.e. gas inflated ballons used as well?

Would this put us at risk for air embolisms, if it somehow escaped the catheter?
"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
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Postby bestadmom » Sun Aug 01, 2010 6:13 pm

Thanks Cece. I cringed watching myself. I talk too fast and make goofy faces.
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Postby ozarkcanoer » Sun Aug 01, 2010 6:49 pm

Michelle,

I've watched many of the videos today and was so happy to be able to see and hear Dr Sclafani, Dr Siskin, Dr Haskal and everyone talk so enthusiastically about CCSVI. What a wonderful thing that we can see the videos. I haven't seen the one with you yet. Can you give me the video number ?

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Postby Cece » Sun Aug 01, 2010 6:54 pm

bestadmom wrote:Thanks Cece. I cringed watching myself. I talk too fast and make goofy faces.

Not at all, you came across as animated and intelligent. I think you represented MSers and the CCSVI Alliance very well.

the direct link:
<shortened url>
:)
Last edited by Cece on Sun Aug 01, 2010 6:55 pm, edited 1 time in total.
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Postby bestadmom » Sun Aug 01, 2010 6:55 pm

Hi OC,

It's #8 on Denise's link from above.

MB
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Postby newlywed4ever » Sun Aug 01, 2010 7:11 pm

Cece wrote:
bestadmom wrote:Thanks Cece. I cringed watching myself. I talk too fast and make goofy faces.

Not at all, you came across as animated and intelligent. I think you represented MSers and the CCSVI Alliance very well.

the direct link:
<shortened url>
:)


Cece summed it up perfectly - you were an outstanding representative!
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Postby ozarkcanoer » Sun Aug 01, 2010 7:28 pm

Michelle,

I just watched your video, and two thumbs ups for you and CCSVI Alliance. I hope to make a donation soon but we are paying a lot for my procedure in Baltimore (our insurance is atrocious) so it may take awhile for our finances to settle down. Whoever took the trouble to make the videos and make it available to us (girlgeek?) deserves a heartfelt thanks. The presentations sure raised my spirits. Ya gotta have hope.

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Postby bestadmom » Sun Aug 01, 2010 7:40 pm

Thank you Cece, NewlyWed, and OC. OC, do not worry about making a donation to us. Take care of yourself. Once you get treated and stop having headaches, volunteer with us. We've got so much work to do!

GirlGeek hasn't stopped working on the videos she took since last Monday night. She sat the whole day with a monopod, which is a single pole that attaches to the camera and must be held steady. I don't know how she did it, but the videos are great. The day was filled with info, that I can watch the videos over and over.

Thank you Dr. Sclafani for giving The Alliance and me the opportunity to debut at your conference. You put together a tremendous program that needs to become an annual event.
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Postby Cece » Sun Aug 01, 2010 9:28 pm

DrS, you mentioned satisfaction assessments, this is somewhat related.

Have you taken into consideration how MS cog-fog and other cognitive impairments will affect how we answer whatever questionaires or assessments you give us?

I found an article for you: Issues of consent and data collection in vulnerable populations.
Journal of Neuroscience Nursing August 2002

Maybe some useful ideas?

"Many questionnaires are constructed using a stem, followed by several adjectives. For example, "In the last week I felt ..." followed by as many as 50 items. In a new questionnaire (or an existing questionnaire that is intended for use with a cognitively impaired population), consider using a simple declarative sentence for each item. Those with cognitive impairment tend to have trouble remembering the stem, but can respond successfully to a short sentence."

"For those with MS, the timing of the consent or the collection of data may make a difference in ability to understand and process information as well as energy to complete the tasks."

<shortened url>
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Postby Algis » Sun Aug 01, 2010 10:33 pm

Please consider an physical option as well....DVD disk?, flash drive? I live in a rural area with no broadband connection so downloading isn't a realistic choice.


As soon as I finish downloading; I can make whatever format needed (USB, DVD's, etc...). We'll have to find a "duplicator" in North-America since shipping multiple copies from here is definitely not time/cost effective.

Cheers!
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Postby drsclafani » Sun Aug 01, 2010 11:48 pm

Cece wrote:The thread has been hot this week!

Michelle, I am watching your speech now, so far so amazing!

JohnJoseph wrote:Are there pneumatic driven, i.e. gas inflated ballons used as well?

Would this put us at risk for air embolisms, if it somehow escaped the catheter?


i was getting bored with it. lots of chatter, not many questions for a couple of weeks. then just before the conference, it picked up a bit, but since i acted out with poor costumenastional, still feel bad about that, things have really been flying. lots of great questions. kudos for girlgeek who works faster than the university. that started people thinking again, i think.

i will answer these questions tomorrow....good night
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Postby costumenastional » Sun Aug 01, 2010 11:57 pm

drsclafani wrote:but since i acted out with poor costumenastional, still feel bad about that, things have really been flying


Don't feel bad. I was sacrificed for the common good :)

Good night doctor.
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Postby joana123 » Mon Aug 02, 2010 4:00 am

drsclafani wrote:
CCSVIhusband wrote:
drsclafani wrote:
joana123 wrote:Thank you for your reply.

I feel like even before the liberation treatment, no changes have not felt at all and I doubt that the veins were enlarged because on the the control Doppler doctor found that nothing had been done and called the doctor who performed the surgery to explain the situation.
What I have passed, that was a ''horror''. I hope my pain will get done, because i have a scheduled appointment in Bulgaria in early September this year.
I guess there will be more lucky!

With respect, A.

joana
are you primary progressive MS? often there is no change which might be good if you are deteriorating fast. Stabilization is sometimes the goal. Was ascending umbar venography done? did they go in to your right or left groin? was the azygous studied by venography and was angioplasty done there?


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

the two cases referred to in your citation were for treatment of complete occlusion of the inferior vena cava. This resulted in major league obstruction and high flow through collaterals, including the ascending lumbar vein. There must have been massive blood flow through that the ALV, keeping it open. in ccsvi we are speaking about getting relatively low flow out of the spine through the alv or the lumbar veins. more of a trickle. i would worry about angioplasty of these small veins failing.

but we are not quite ready to be treating the smaller veins just yet. we need to focus mostly on the larger veins right now



Dear Doctor,

thank you for your reply. With regard to my condition I have nothing to lose and therefore go to the Tokuda hospital. I would be happy if they felt a little improvement. Certainly I will report what is my situation after liberatio treatment in Bulgaria.

Thanks again,
with respect, A.
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Postby lifeisgood » Mon Aug 02, 2010 5:57 am

drsclafani wrote:
lifeisgood wrote: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 !


mysterious. because the effect was rapid and fleeting, one can propose that the effect had something to do with blood flow, perhaps it was one of these obstructions that could get stuck in the open position for a while.

would be great if it just stayed that way.

has your husband had an ultrasound yet? or venography?


My husband hasn't been tested yet. He's on your waiting list and Dr. Dake's. We're in the Chicago area and are just kind of watching and waiting to see who might be starting to do the procedure around here. He hasn't been working for quite awhile and money (what money?) is very tight these days. :) I need to pm you a question if you have time for a short answer. Thanks again.
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