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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.
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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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I hate to sound like a negative nelly, but I rarely see the videos of these folks even two weeks later. We see them before, and then on their way to, and then just after the proceedure. They describe it in great detail, but 2 days out...we lose them. Are they afraid speaking the truth will discrourage those who go behind them? I would rather know the whole truth, instead of folks going to the opposite extreme in trying to protect me. |
I asked my Neuro about CCSVI when I had my appointment last month. He wasn't impressed with it at all and discouraged me from even getting my hopes up. But.....he's sort of negative about everything except the DMD's that have been around forever (and don't work that well :rolleyes:). He did listen to my heart and put the stethoscope up to each side of my neck but said everything sounded OK. He's the same abut LDN, too. Thinks nothing works but the things that cause a zillion side effects. I'm beginning to think that these doctors have an agreement with big pharma to keep everyone gainfully employed! :rolleyes:
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Exactly, Dej, that's my question too. A few months after the procedure, the CCSIV patients all seem to vanish???
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Maybe we should all put a video on YouTube asking what the long term prognosis is with the people who have had it done.
If I had it done.....and it worked.....you better believe I'd be posting 1, 2, 3, 4, etc. month follow up videos to prove it to the doubters. Makes me wonder why nobody has bothered to put up a post-op video....and not just one the following day. |
I mentioned ccsvi to my new neuro #4 or 5 now and his reply was along the lines of farse. I said nooo..(as my high opinion of him was about to fall) "what about all the utube videos? they're not faking". He said if it makies me happy to keep looking into it.
I mentioned it to a world known surgeon while I was in NY over summer and he said if I need it - don't hesitate. Simple procedure said he. His walls are covered with awards and magazines with him on them though so simple to him may not be to others. What do you's think about the dissolvable stents coming out in 3 yrs? I don't see how people could relapse unless the vein was just stretched for quick fix and reshrunk. Think about it. I'd certainly roll the dice with metal stent tomorrow if I knew I'd stop progressing but that's me. |
http://www.msdlatinamerica.com/ebook...#F49_40-RE1-A1
Above shows many doppler images & more. Looking at my doppler again, I think I need to have it viewed by another doctor. Tech's aren't allowed to say much during procedure (shame) and it was my 1st time. If I ever have it done over again, I'll have him/her look harder at pulses, flow, ect. Edit - and no longer will I say ccsvi to Dr's. Venous Insufficiency they'll all understand. |
The mesh stent made now, is made of Titanium and a bit of Nickel in it. This way you can still have MRI's with the metal in you. Adn not beep at the airport. ;)
I'm going, nothing is going to stop me. It has been over two years that people have been having this procedure. There are videos that show how it has helped over 2000 people, and they made up to date video's of these people two years out. Another website has people talking about how they are doing, good ones or nothing at all yet, and how they feel about it down the two year road. Many say they would do it again if needed. Some will need it again as not all the blockages are clear or some have re-stenosed and need stents. If you are young and not bad off you can wait. You probably have the time to. I feel it is well excepted in the community and they have been doing this procedure for tons of years for other purposes. They just need the training for the testing protocol. They have to see MS patients MRV's and a non MS MRV's and find the difference, if any. Same with 3D Ultra-sound Doppler's for reflux and blockages. The best test is the Catheter Venogram, just prior to the Catheter Venoplasty, but you must have a test before that. JMO :rolleyes: |
I suppose it could be the placebo effect? Or something like that? I know that if you are very up and positive about something you can have the feeling that it is doing something when in fact it is really just an increase of endorphins and the like. After the initial excitement wears off, the former condition returns.
I have a lot of questions about this (and any other supposed MS "cure"). There have been lots of snake oil salesmen out to make a buck and most of these just don't pan out. :( My niece tried many of these over the years, from bee sting therapy to oxygen chambers and she's still in very poor shape from the MS. :( I am very critical and so far only open to those that have gone through clinical trials and have shown effectiveness for treating MS when it comes to medical procedures or medications. |
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according to that link most folks take 2 to 3 months to BEGIN to see improvements. This flys in the face of those posting immediate post operative videos showing them walking out of the hospital. Some are reporting feeling worse after the proceedure.
there is so much conflicting information. it just scares me. :confused: |
Yes. I'm left confused.
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Lady - you're getting it done? If so YOU'RE LUCKY!! :) God I wish "I" could tomorrow make that yesterday!
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I guess like everything with MS it's an individual thing. We all have different sx.......we'll all have different types of "success" with this procedure. I would think alot depends on the severity of your MS when you have CCSVI performed. The worse you are the less pronounced your improvement would be. I'm just guessin'.......
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EXACTLY - DRUGS WORK FOR SOME BUT NOT ALL!
I'm going downhill in a HURRY on Tysabri, Rebif did nothing, Copaxone was amazing 3yrs then down I went! Maybe it's because the majority are women and more likely to not have the b---'s guys do literally but for me, a paraplegic LOSING his hands, come on! The bunch of you that are stable and happy the way you are that's terrific! But the bunch of us that are seeing our death bed approach no matter how hard we exercise, ANY possibility's a BEAUTIFUL THING! Can I get a AMEN? |
Amen, Eddie. I totally understand and I pray that this is the right procedure for you. :hug:
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@ Lady. Are you paying for the MRV out of your own pocket?
And the going rate I have seen is $2400 for the MRV. |
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It depends where you have it done and what type of ins you have. MS is not mentioned, ever. It is Venous Disease for ins, which it is. Medicare or Medicaid pay for most of it. Not for travel expenses, hotel over one night, or meals. Many private ins companies pay for venous disease procedures all the time. We should not have kinks or blockages in our veins, it's not normal. If it were in our legs they would fix it, right? Once the veins are fixed (congenital defect, or bone growth or pressure on veins) MS symptoms disappearing are the bonus we get. :) Chicken or the egg theory. I will still stay on LDN, others stay on whatever they think is helping them too. Or they may toss their meds. out the window. JMO |
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@sw8689 didn't your brother have a procedure in AZ a few month's ago?
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My brother had his procedure in cab San Lucas. He noticed a huge increase in energy levels. I dont think he has had any miraculous recovery yet, at least that I know of. I believe ccsvi is a separate issue not related to ms, but is real and has serious consequences if not dealt with.
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I had my procedure May 31, 2010. I am well over the 5 month mark now and the marked improvements remain. In fact, I am still seeing small improvements.
I still have to be careful not to over do things, but my "bad" days now are still better than my "good" days before. I got my life back! I would say that I still have some side effects from years of damage, but if I didn't know about my MS, I'd probably be able to brush my mild problems off - just like I did for the 10ish years before I was diagnosed. This is the real deal. I'm happy to answer any questions. |
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1. How many years have you had MS? 2. What type was it when you had the procedure done? RR...SPMS...PPMS??? 3. Did your insurance cover everything? 4. Did you have any bad side effects? 5. Did the procedure hurt? Can't stand much more pain here. 6. A big one I should have put at #3, were you walking, getting around, etc., or using a chair when you had it? If a chair, can you now walk? I appreciate you taking the time to answer these questions for us. Being spms and in a chair, I'm ready to try just about anything as long as it does no harm. Where did you have it done? Trust your wonderful results continue and more appear in the future. Take care......:) |
Yes, thank you so much JM.:) I too, would appreciate your answers.
I have a friend going to NY at the end of this month for the test and procedure. I am 70 yrs old but would still do this, if it would help and do no harm. I can still stand, take a few steps to transfer but am in a scooter most of the time. Good wishes to you..:hug: |
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Honestly, it's been a dream come true. I had just resigned myself to the fact that I was screwed and then this came along! I won't say I'm "cured", but I can forget that I have MS for the most part. Now it's back to annoyance stuff instead of disabled and utterly miserable like I was before. I can't even let myself use my handicapped parking placard now because I feel guilty. I do still have to make sure I don't let myself run down though. If I over do things for a few weeks I do start getting some mild dizziness, mild fatigue and some optic neuritis. Considering that showering used often be the only thing I could do in a day, this is a 1000% improvement. I am off ALL medications except my low dose aspirin and my vitamins. Stopped taking my copaxone a month after and weaned off my SSRI in June/July. It's still hard to fully accept that I have been freed from my prison. Somebody pinch me! |
It sounds like the stent is the way to go, since ballooning doesnt seem to hold.
Did they use a special stint, just for veins? Isn't the stent a bit dangerous? Thanks so much..:hug: |
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My stent did fine in an MRI and doesn't set off metal detectors. I was leery of having a stent before the procedure, but now I am very glad I have one. The chance of me re-stenosing now is almost nil. I haven't had complications yet, so I probably won't now. In fact, a follow up ultrasound this week showed the stent free and clear. If my stent breaks in half 10 years from now and kills me, I'm still happy I got it. I'd rather have the 10 good years than 40 years of the declining misery I was in before. |
Thank you so much, JM, for answering all of my questions! I imagine it does seem like a miracle to you, having your life back.
I wonder if age has anything to do with the success of the procedure? You sound pretty young -- I just turned 67 last month and have been diagnosed for 20 years. In hindsight, I'm sure it started 14 years previous to that after the birth of my third child and optic neuritis. I feel very fortunate that it stayed in remission all the years my kids were growing up so I could do all the usual crazy things with them!!! Have been in this chair the past five years and can barely slide my feet backward to transfer. Are you familiar with anyone in similar circumstances who had the procedure and what was the outcome? Do you know of anywhere in the US or Canada that performs this procedure successfully? Traveling a great distance is out of the question for me at this stage, so it has to be somewhere a little closer. :) One of my big symptoms has been nerve pain right from the beginning and nothing takes it away -- except being totally knocked out!! I would give just about anything to feel "normal" again and be able to go for a "walk". Sorry to be such a nuisance asking all these questions, but I'm really interested and don't have the energy to do all the research myself. I'm so glad you found us -- even though you're in a different "class" now!!! YAY!!!! :) :) |
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I am almost 34, so yes, younger than you. I do know of a good number of people who are much older than me who have also had good results. Once you get on the facebook CCSVI sites you'll see literally hundreds of articles from North American newspapers with success stories. It's estimated now that some 5,000 people worldwide have been treated for CCSVI. A family member of mine referred another person for treatment. He was in a chair and bad off. He has now improved to the point where he can do his own transfers. Have also seen reports of previously chair bound people being able to use walkers now. Where are you located?? |
Thank you once again for sharing your experiences with CCSVI. I didn't realize so many people had undergone this procedure. Even to be able to walk using a walker, would be wonderful at this point.
You asked where I live -- it's Northeastern Pennsylvania, USA. I'm about an hours drive from the New York State border, 2-1/2 hours from New York City, 3 hours from Philadelphia. I believe someone here was going to Albany, New York for the procedure. Not sure how far from me that is....perhaps 3/4 hours?? I do know around this area, there aren't even any MS Specialists, Clinics, etc. I have seen the discussion at thisisms, but never participated. As far as facebook is concerned, I don't have an actual computer, just an ancient webtv that won't allow me to get on facebook or any of the "social" sites. A laptop sounds pretty good to me now though, I'm getting frustrated with the limitations of this webtv. Are you in Canada? Thought possibly since you didn't sound too happy with the government! Please stay around. It's really helpful hearing from someone who actually had this done. And at your age -- I pray it's the beginning of a long, MS-free life!! :) |
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