L wrote:Hello Dr Sciafani, hello all.
I would like to know if vasodillators might be able to alter the effects of CCSVI to any worthwhile degree.
My body has become thoroughly addicted to Chilli, a vasodillator. A bottle of Frank's hot sauce lasts me 3 days and my local curry house doesn't have the ingredients to produce a curry that's hot enough. I am starting to feel a little abnormal : ( But I can't help but feel that perhaps my body knows what's good for it.
Just typing this is making me think about the kitchen where there's a new bottle of a Jamaican hot sauce. I tried a little on the way back from the supermarket and it's pretty good..
ikulo wrote:Dr - I am curious about the IRB process. Is IRB approval required for non-research procedures? Why are angioplasty procedures being required to get IRB approval if they are not being done for research purposes or in a research setting? Or does an IRB have wide discretion in deciding what requires approval? Thanks for your time!
hopeful2 wrote:Thank you Dr. Sclafani for taking the time to respond to us PwMS and for trying to continue with CCSVI procedures with IRB approval. I've posted only a few times but am here a lot of the time. Pieces of the jigsaw puzzle of my life are falling into place so I'm finally ready to speak up more.
Is there anything I (or we) can do to help you with the IRB process? Would letters of support from patients help convince the IRB that your work is very important and being conducted safely? If yes, who would I send the letter to?
Patrice (hoping for liberation someday)
MS_mama wrote:Just want to echo everyone else's "thanks"... I am really appreciative of your passion and energy for this cause.
I wonder what your thoughts are for the possibility of re-stenosis during pregnancy and in the postpartum period, especially since women often relapse post partum. After my 2nd was born, I had 4 relapses in the first year and at least 4 new lesions (the first ones, leading to the diagnosis). Being only 26 and hoping for more children (soon since "Time is brain") I am mentally trying to plan out when it would be ideal to schedule a procedure (assuming I have the luxury of being able to do so). Do you think it would be advisable for a woman who has recently had a baby to be re-examined for restenosis?
And how do the operation, dyes, and meds afterwards interact with breastfeeding? Could you please list the dyes and medications involved so I could look them up and see if they are contraindicated during breastfeeding?
with respect to when to do a liberation, it would approriate within the first two weeks of having menstrual period or after a negative pregnancy test.
We use xray dye, aka contrast media and anticoagulation for the procedure. the contrast media I use is called visipaque, a noninoinc iso-osmolar agent. I believe that it is safe in young children especially if ingested rather than injected. mothers milk would lead to ingestion.
So i guess that the time to have a liberation is AFTER delivering a baby.
Thanks again for your time and interest.
costumenastional wrote:Doctor Sclafani, maybe you remember that a doppler that i have had recently showed serious blood flow issues in both my jugs. I am to visit Professor Grozdinski soon for possible treatment.
I watched Zamboni's views about stents the other day and i am very sceptical.
You see, Grozdinski is stenting big time. I know that you have already replied about this many times but here goes:
Angioplasty is well known not to have long terms efficacy and i believe this is why some docs go the other way.
Is really stenting veins that dangerous? For my understanding is that once the device becomes one with the vein's wall after a couple of months it s safe.
I am sick and tired of all this terrorism.
jak7ham9 wrote:Ok since operation the urge to urinate has 100% disappeared I never wake up because I have to pee anymore. Also the forgetfulness I was starting to develop has disappeared and my brain in slowly returning to it"s original steel honed edge. In regards to exercise the gentleman is 100% correct in that movement (ie walking exercise) gets rid of purple feet at least temporarily too. Which is why it is soo important to get physical therapy after operation and get muscle strength up get blood flowing. It has been a total nightmare getting a damn pT script from the state insurrance physicans as they want you to write it and you don't feel comfortable doing it. So I am going to pay a pay for service doc $250 not under insurrance to write me a script for physical therapy. Eventually this should be part of the whole program. So little improvements all the time and I am walking more with out touching walls or holding on. Still think more to come. You are a super human being! Barbara
drsclafani wrote:Dear Dr. Sclafani,
The vascular surgeon called it exactly a long standing thrombosis of the left internal jugular vein. Something we expected because of the MS.
He tried a recanalisation. This was not succesfull. Are there other possible treatments for liberation if setting a balloon or stent are not possible?i would have to see the imaging at the least to make an intelligent answer.
were there no other lesions?
Dear Dr. Sclafani,
According to Dr. Torsello there were no other lesions.
In the April 14th presentation of the MS Society on CCSVI Dr. Zamboni said something of great interest for us, regarding the completely blocked i jugular vein.
He said nr. 1 treatment agioplasty, nr 2 treatment angioplasty and when necessary open surgery, bur only on the jugular veins. He called this open surgery on the jugular veins a safe option.
My question is: Should this be a safe option for a completely blocked vein which could not be treated by angioplasy?
And is there already experience with this option, and do you consider this save too.
At least for me this remark of Dr. Zamboni wasa the first time this option was mentioned.
The part of Dr. Zamboni where he commented on this matter can be seen on http://www.youtube.com/watch?v=TkMQPk0GJSY
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