I am someone who just saw the doctors at Georgetown. I was not favorable toward stenting, at least not at this point. However, after it is properly tested and studied, it may prove to be an option.
Dr. Zamboni simply redid the angioplasty procedure. At this juncture he is not in favor of stents. The veins are something like elastic, you stretch them out a few times and then they stay open. The procedure has to be repeated several times, but eventually it works. That is how Zamboni has proceeded with this.
Georgetown is doing solely Angioplasty at this point, and will repeat this should the veins restenosis. At this point they are not stenting which i am cool with.
However, I was advised at Georgetown by Dr. Lee to keep an open mind regarding stenting as we are at the very beginning of properly treating MS as a vascular condition and we do not know what will be developed.
Someone I know had Liberation and stenting in Connecticut due to a special exception the vein would not stay open. However, she did not take it easy, was testing the limits of what she could do, jumping around even and within a week the stent slipped and her veins closed up again. They had to go in again and redo the operation.
I really think for those who are getting stents, they need to take it easy and not over do it. Stents really CAN slip.
For myself, dependent on what they find, I will be going to route of Angio plasty only. If in the future a protocol for stent use is thoroughly developed, I would consider them.
please be careful I know we all believe in this and want so much to get better. If liberated, lets take baby steps and prove the efficacy of this . . that way we don't give fuel to the adversaries of CCSVI to blast their propaganda.
I will say that my improvements have not been as dramatic this time, as in my first, but I do think they will come. When I lost my improvements at the start of March, I was really immobile for those two months, so I know I have more to rebuild. The fatigue is gone again and that has allowed me to begin riding a recumbent stationary bike. I also went and got an inversion bench which lays you upside down by your ankles. The bench has done a great job of stretching my body out to relieve the stiffness and stretching out my right shoulder, that has been difficult to use. I am also making progress on the bike, so I am getting stronger at supporting myself. So, I am going to work hard at the rehab and see how it goes. My voice is improving and breathing always stayed better. What I look forward to in the next few months is regaining my hand coordination and walking with greater ease with my walker. I was able to sit up in bed this morning with no assistance for the first time in weeks, so one step at a time!
My only editorial comment about stenting is that I am so glad I had an opportunity to have these procedures done. It is a personal decision for each of us to make. I felt much better when Dr Sclafani mentioned that the stent is pretty well covered after a month. I would say that the skill of the surgery team to choose proper placement, positioning and size is KEY. I also noticed the comment by Dr Dake who said that stents have been used in veins for decades, but that that has always been an off label use of that stent, since the FDA approval of stents are for arteries. I understood him to say that development of a specific stent for veins will require it’s own clinical trial for FDA approval, in addition to the clinical trials required to perform the CCSVI procedure itself. To me, that means YEARS away and I am not willing to lay in a bed and wait while my little boy grows up without my involvement.
I will let you all know how things are going after a bit. Take care everyone, Brynn
I am going back to Poland in October. I have already 1 stent on left and ballooning on right. What would you guess would happen if, at the check-up, the ballooned vein was found to have collapsed? Would I be given a stent immediately? Told to come back yet again?
Thanks for your educated guess
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I am so sorry for all your problems. Are any of them due to MS ? Your voice and your right hand is that an MS problem and new or old ? I am surprised they are looking at Lyme disease so the doctors must not think your problems are MS related. Please know we are thinking about you and when you feel up to it give us an update. We have followed your story so long and we care.
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I've also begun Cheers endothelial health program. That probably helped with the inflammation since a couple of the supplements have vit C in them.
My thoughts are with you!
sorry to hear your having such a rough time of it
have you had a doppler to check jugulars since your last visit to Poland ?
my friend had one jugular completely block after just baloon angioplasty and hear its more common with stents
they felt a slight constant pain on the side it happened which made them go for check up
please let us know what your doc says about Lyme
hope this all works out for you soon
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CCSVI alive and well in Poland. Fascinating article.
Last post by Thomas79 « Mon Jun 24, 2019 12:17 amReplies: 4
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by CureIous » Sun Apr 08, 2018 11:54 pm » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
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Mon Jun 24, 2019 12:17 am