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Venous Insufficiency and Multiple Sclerosis:Too Soon to Tell
I just got this in my Neurology Watch newsletter. Not sure if it has already been discussed here.
Quote:
http://neurology.jwatch.org/cgi/cont...q=etoc_jwneuro |
Thanks so much Chemar for this info. I do hope that peeps don't rush this thing, although, a friend sends me CCSIV videos of new patient's and theie positive reports every week.
Go to U Tube and you will see several Success stories by peeps who have had the balloon treatments. |
I'm hoping that the CCSVI is a real thing and not just a snake oil cure.
I'm really interested in it, but not interested enough to allow someone to screw around with the veins in my neck. I have a weird phobia about people touching my neck. (came from a bad experience with a chiropractor...moron didnt give me any warning before he cracked my neck. I tensed up and it HURT a lot!) |
Well I am a true believer. :) I am going to be tested for CCSVI within the next few months with a MRV. I want the test (it's like a MRI only of the veins). If blocked I will go from there. This is only a test, not the procedure, YET!
I believe if we have blocked anything in our bodies, it needs to be addressed. It is not healthily. It is a congenital defect. If my leg had a blockage then that vein should be unblocked. They do it all the time. This is the same principle. I spoke to my IR when he did my Thyroid biopsy on that nodule. He has done many of these procedures for accident victims, birth defects, illness like cancer, but not with Dr Zamboni's protocol. He is being trained now. He will not be the one I pick, I would want an IR MD that is well trained with the special protocol for testing, so they know exactly what they are looking for. I will get a consultation and a copy of my MRV. It is up to me what to do with it, and whether it is negative or positive. My MS Specialist's Hospital in NYC, where I used to go, has started doing them. I trust him and the hospital. I don't believe they would risk their reputation on a snake oil procedure. They do surgery on all the famous stars and famous sports people who get injuries in their sport, like football players and such. So that's my story and I'm sticking to it. :hug: When I find out more I'll keep you updated. |
I'm from a family of medical people. I've got a healthy suspicion of being in the group of the first people to have any procedure done. I want to wait till it's been around for more than a year or two and find someone who's had a lot of success with the surgeries/procedures before I'd have it done.
Hopefully I wont have any massive amounts of damage done to my body before that time. |
Has anyone here had it done with success? I know 2 thru blogs, Message boards, etc., who have had it done but with no success. U-Tube is NOT my yardstick for evaluating anything.
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I have seen dozens of videos of folks that have had this done, and got up out of their wheelchairs, or scooters, but I dont know them. I have only seen their video up to two days out from the proceedure. I dont know anyone else who knows them, so I am skeptical about whether or not the cure lasted. Wouldnt we see tons and tons of videos of them IN a wheel chair and then ones of them running races, or dancing? I know I would be shouting it from the roof tops and documenting it everywhere.
From what I have seen folks get that immediate high after wards, and ALL speak of how their fatigue is dramatically less. Their cog fog lifted. most talk about how the strength returned to their legs, arms or back. Many rose shakily out of their chairs and took some steps unaided. Was this the placebo effect? Was this the snake oil effect? remember the healing tent days when the crippled would walk up on stage and cast aside their crutches and walk, only to be found a week later bed bound due to over exertion on their tiny limbs? I want to see some long term videos, or video of folks doing their daily living stuff 2 months later. 3 months later. 6 months later. I am not even talking about those who risked getting those stents popped in. Just those who had the balloon to widen and open the space. It wouldnt reclose in 6 months. it would take a couple of years. I want so badly for this easy fix to be a cure. I really really do, but my advanced medical degrees, and experience are saying "wait a minute" lets just hang on and see more of what they are talking about. Like Mona vie juice, or Acai berry drinks. Show me! Such a scary disease, and such a promising treatment. PLEASE Dear God, let this be our fix. :cool: |
I know a man who is having the initial MRI done in the beginning of October. If he has a blockage, he will have the procedure. Should be interesting.
I hear that the statistics are 1/3 patients have noticeable positive change, 1/3 gain small change and 1/3 have no change at all. If I am a "glass half full" personality, then a 60% chance of something good is pretty good odds. Better than the ABCR's @ 30%. Too soon to determine long term effects. The lack of a control factor remains. I agree with Lady that if I was to proceed, I would want the Zamboni protocol. And the doctor trained in the procedure. There is a certain amount of desperation. Can there be a tipping point in the damage to a nerve? I know about the two credible sources Kicker mentions. Both in wheelchairs. Can that be a factor? Location of the lesions. There seems to be a better result if the lesions are in the brain rather than the spinal cord, right? That is why there is less success for PPMS? My PCP's husband has SPMS. We talked and factors such as age come into play. She said the veins are less flexible with age and could lead to complications. One needs to have a very competent doctor. I still want to know if I have a blockage. Just the first step is where I am headed but if given the chance, I will do it. I am moving in that direction. I just wish we would hear from IR's rather than neurologists. I like the analogy of not asking an electrician to be the expert on a plumbing job. |
My doctor was flat out honest about CCSVI and the procedure. Her friend who's more progressed (EDSS) with her MS had the CCSVI procedure done, was doing better, and then a few months later crashed and burned, and was worse than before.
With that said, my symptoms are very different than the symptoms this lady has, and my doctor said it's definitely worth considering in my case. I received a call from a reference my doctor sent my way, however I haven't had a chance to call back due to being so busy, but it's to discuss the procedure being done in Poland. I won't pay to go to Poland, or for the procedure. I'll wait for it in Canada. Until then, I'll play my cards in my homeland :). |
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