JohnJoseph wrote:Are there pneumatic driven, i.e. gas inflated ballons used as well?
bestadmom wrote:Thanks Cece. I cringed watching myself. I talk too fast and make goofy faces.
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:
"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."
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.
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?
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.
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?
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 ...
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
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:
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?
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