success of ccsvi

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

success of ccsvi

Postby numbness23 » Wed Feb 16, 2011 8:36 am

Hello All,
I have som real mixed feeling about this procedure. Some posts I read explain how exciting the results have been and improvements that have been seen. Others are not so rosie and complain about exacerbations followed by steroids post procedure or just no improvements period followed by normal progression of the MS. Others are just so elusive its like chasing a Doe in the woods.

I can follow one patients experience and see great things and another who is quite disssapointed. Is it the Dr performing the procedure? Is it the patient? Is it that we just dont know?

Its difficult for me to get excited. I am 42 and have ms for only 4 years. It started in my eye then quickly moved around my body. Four short years and I am using a scooter to get around.

Is this procedure going to get me back to walking? My feet are freezing but honestly if i just get warm feet that isnt enough for me. I am fighting like hell every single day. I realize even subtle improvement are enough for some but I would really like either to stop this in its tracks or better yet get some function back.

The results are such a mixed bag in my opinion and not that i think anyone is being untruthful i just think there are so many variables. For instance one patient said she notices sounds and colors and such on the table directly after the procedure. Could she have been so preoccupied by the anticipation that she didnt notice those things and when the proecedure was over and she calmed down from the process and the adrenaline calmed down the sounds were already there but they just were not noticed?

It also seems depending on the stage of the disease really makes a huge impact on the results. I read about improvements then come to find out the patien has benign MS. That really makes a big ass difference!

Can anyone enlighten me with regards to this or are we just still so far in the infancy that we dont have the answers. I would do anything to get better but if going through the process had the chance of doing nothing because there are just so many variables I am stuck in my scooter. I couldnt afford it financially or physically. What to do..What to do...What to do.... :?:
Oh and no offense to any but the seem of the pre and post videos...i mean really more confusing than anything...
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Postby cheerleader » Wed Feb 16, 2011 9:07 am

Hi numbness--
Welcome. There is still a lot to learn, and you're right, not everyone benefits from angioplasty. The best recommendation is to learn all you can.

www.ccsvi.org
CCSVI Alliance has all the research and info in one place. There is a program of diet and nutrition that you can follow, without any angioplasty. There are patients' stories, both pro and con. There are clear explanations and videos by doctors (not you tubes of patients)

I hope you get some more answers on the site. Keep reading, keep learning. Don't feel any pressure to do anything just yet.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby numbness23 » Wed Feb 16, 2011 9:18 am

THANKS CHEER...VOICE OF REASON....
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Postby Jugular » Wed Feb 16, 2011 9:21 am

It's a difficult decision to make because ultimately you are deciding whether to undergo an experimental procedure with some expectation of a benefit that has not been 'proven' by any formalized long term study. Angioplasty is a pretty benign medical procedure but not without risks.

To me the tripping point was getting an MRV and seeing the results myself. I simply said, well if the exhaust pipes in my car looked like that, I'd get them fixed. I then researched where I might get the procedure. I'm glad I did. Because I'm able to do things now that I haven't been able to do for ten years.

There is no assurance that you will experience any benefit at all and there is a chance of making yourself worse. So it's a hard choice, but it is yours to make. Getting imaged might help you decide, but keep in mind that MRV's and ultrasounds can be misleading.
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Postby numbness23 » Wed Feb 16, 2011 9:27 am

Jugular wrote:It's a difficult decision to make because ultimately you are deciding whether to undergo an experimental procedure with some expectation of a benefit that has not been 'proven' by any formalized long term study. Angioplasty is a pretty benign medical procedure but not without risks.

To me the tripping point was getting an MRV and seeing the results myself. I simply said, well if the exhaust pipes in my car looked like that, I'd get them fixed. I then researched where I might get the procedure. I'm glad I did. Because I'm able to do things now that I haven't been able to do for ten years.

There is no assurance that you will experience any benefit at all and there is a chance of making yourself worse. So it's a hard choice, but it is yours to make. Getting imaged might help you decide, but keep in mind that MRV's and ultrasounds can be misleading.


THANKS JUGS, but as you mention in teh end there...the misleading part..again its hard to put faith in something that seems so obsure at times? I am really excited for you and the fact the procedure has helped. You deserve to feel well!
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Postby Coolcatcarrie » Wed Feb 16, 2011 9:35 am

Hi numbness
Your the only one that can decide to go for it or not, but I'm a strong believer in the science behind ccsvi and decided to get treated. My azygous and both jugulars were successfully ballooned and I have seen several significant improvements so far and I expect to see more as I build on things (excerssising unused muscles). My opinion is to choose a v good surgeon to be treated by and give it a go, no-one can say what results you might have but all I can say is that you won't know unless you try. X
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Postby Coolcatcarrie » Wed Feb 16, 2011 9:39 am

Ooh that was really bad spelling of exercising! P.s has only been 1 month post angio. X
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Re: success of ccsvi

Postby Cece » Wed Feb 16, 2011 12:18 pm

numbness23 wrote:The results are such a mixed bag in my opinion and not that i think anyone is being untruthful i just think there are so many variables. For instance one patient said she notices sounds and colors and such on the table directly after the procedure. Could she have been so preoccupied by the anticipation that she didnt notice those things and when the proecedure was over and she calmed down from the process and the adrenaline calmed down the sounds were already there but they just were not noticed?

that sounds like me :)
When you're reading reports from other people, you have to be skeptical.
It's hard for me to describe about the music, but no, from what I'm experiencing, I've been surprised by music a few other times too now since the procedure, it's something in my processing that has changed, my ability to not be jarred by it, and probably my basic sensory level hearing, not that I had been aware of hearing impairments before.
I've had difficulty in thinking when there's background noise, music can be a background noise. Since the procedure, I've been able to enjoy a tv show in a public lounge with other people around talking, I wouldn't normally have been able to do that.
I've had occasional tinnitus, too, perhaps that is a factor.
It was actually on the table, after the right jugular and before the left jugular.
I had 80% in the right jugular and 100% blockage in the left, so a pretty severe case.
The best I can do to describe it was that I was aware of it as music-noise before my blockage was cleared and was aware of it as music-music after the blockage was cleared.
I am also deeply enthusiastic about ccsvi, so would be a candidate for placebo effects, which is why I'm glad to have these surreal color changes, it's a very dramatic difference.
Welcome to the forum and no rush on deciding, there's not one right answer for everyone especially with the financial considerations.
Can anyone enlighten me with regards to this or are we just still so far in the infancy that we dont have the answers. I would do anything to get better but if going through the process had the chance of doing nothing because there are just so many variables I am stuck in my scooter. I couldnt afford it financially or physically. What to do..What to do...What to do.... :?:

We are far in the infancy. Yes, going through the process has the chance of doing nothing. Most who have had it, though, have said they are glad they did. It's been suggested that 1/3rd get major improvements, 1/3rd get minor or gradual improvements, 1/3rd get no change, but there's not research to back that up yet. Be wary of stents or clotting; pick your doc carefully, ideally one who has done over 100 procedures and IMO prescribes a true anticoagulant but that's an opinion and not a known thing yet. With spinal cord issues, imo, you want someone who is very thorough about the azygous, which is the vein that drains the spine.

I am sad to hear that you've had the MS diagnosis such a short time and experienced disability that fast. This disease is not a fair one.
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Postby EJC » Wed Feb 16, 2011 4:27 pm

When I first discovered the theory of CCSVI I was sceptical but curious. I read as much informastion as I could find and discussed it at length with my Partner Emma who has been rrms for 13 years.

We weighed up the pros and the cons and logically arrived at the following conclusions:-

We waited until there was a viable procedure in our home country, in our case this was the UK. This is less to do with specific surgeon or Dr competance but more to do with follow ups (backup) if anything untoward happened.

As it turned out, we couldn't have been made to feel more comfortable by Dr Reid and the team in Edinburgh.

We figured if Emma had blocked or narrowed veins, it can't be helping her physically, even if it has yet to be proven that it is a cause/effect of MS - it can't be good having a lot of plumbing issues.

We decided we'd book a scan and take things from there.

At each stage, we assessed information, tried to remin objective and not be swayed by possible improvements.

We were careful to read as many negaitves as positives to get a balanced view on what can and does happen.

After weighing all this up we decided that the risk was one worth taking.

We are now some 7 weeks post procedure and Emma had some good results which have remained, she still has good days and bad days and is physically trying to recover from not only a procedure but 13 years of atrophy and poor fitness.

It's not going to happen overnight, we still don't know where she will be in 6 months time but it has made life much more bearable for her and we feel as though weve taken a step in the right direction.

This was very much our decision, we can't make your decision for you all we can do is provide you with our experiences good or bad.
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Postby David1949 » Wed Feb 16, 2011 8:16 pm

It's a tough decision.
I can't add much more than others have said except that you might also want to consider the consequences of not getting CCSVI treatment. For that you only need to look at the EDSS scale.

I wish you the very best.
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Postby brave » Wed Feb 16, 2011 8:44 pm

I have been trying to find common base for successful CCSVI or unsuccessful procedure.
here is my understanding, seems new diagnosed patients have a higher chance benefiting from CCSVI.
I haven't seen any major improvement reported by MSer who have had MS for 5-6 years or longer or maybe at advance stage.
I was diagnosed 12 years a go, I had my CCSVI procedure 10 weeks a go in Albany and I haven't seen a noticeable improvement.

I hope this helps,
Good luck
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Postby CureIous » Wed Feb 16, 2011 9:22 pm

The goal here is to stop any further advancement of the disease.

Everything else, like youtube videos, patient reports and the like, are a snapshot in time. The real story is years away.

So while improvements may or may not show, may or may not last, together with the type of imaging done, skill of the operator, skill of the treating doctor, the presenting condition in the first place, etc etc, there's too many variables to hedge your bets one way or another. It simply cannot be done.

While the patient reports are interesting, intriguing, tantalizing, and yes, sometimes scary and/or depressing and whatnot, in the end, YOU are the one who lives with the result, good bad or blah.

There's nothing wrong with any of the above, so someone is excited and wants to celebrate their newfound gains, who am I to rain on the parade, or anyone else for that matter? I say if you haven't walked a mile in the shoes then you cannot possibly understand how exciting it is when it DOES work, or provides some improvement.

But that should never be anyone's basis for determining whether to have a medical procedure or not. You sound like you've done your homework, go with the best knowledge you have and can acquire, ask every question that comes to mind, step lightly and realize the train hasn't left the station, it's still there, ready for boarding at a moment's notice. Whether you choose to get on or not is entirely up to you.


Myself, being one of the lucky early ones who had zero youtubes, blogs, and politically motivated "scientific" literature to wade through, let alone the media and their hollywood-driven hordes, the decision was simpler, not easier, just simpler and far fewer tangents creating spider webs of confusion. But, like you, I was in a precarious financial situation, with a family of 4 and 1 on the way, and here using precious resources just to see if my neck veins were possibly part of the problem, my trip was partly subsidized by a friend, gas was almost the last of our money, my friend drove me up there, and the copay was going to be two weeks of unemployment minimum, plus if it didn't work, now I'm back to square one AND broke down physically.

I can't tell you there was some kind of magic tipping point, some blazing sign in the sky that went "aha!". There wasn't. But, (I reasoned with myself), if there IS something here, what good is gained by waiting, and/or what good is gained by going for it?

Everyone is in a different place though. What makes sense to me, sounds like nonsense to you. People seem to be more afraid of hearing "I told you so" from family/friends and/or the naysayers, than making a well thought out, intelligent, research based decision.

I won't belabor my own anectdotal report, it's all on my thread if you want to read it, but do want you to know you are having the right discussion, sometimes just talking about it helps to clarify things...

Good luck.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: success of ccsvi

Postby CureIous » Wed Feb 16, 2011 9:34 pm

Cece wrote:
numbness23 wrote:
I've had difficulty in thinking when there's background noise, music can be a background noise. Since the procedure, I've been able to enjoy a tv show in a public lounge with other people around talking, I wouldn't normally have been able to do that.
.


Lounges, public places, crowds used to drive me absolutely bonkers. Stores, trying to pick something off the shelf then someone wants to get by or other distractions, and I couldn't remember what it was I was looking for, that kind of stuff. Maddening. Don't miss it a bit. You could set off fireworks now and it wouldn't bother me. Interrupt me while I'm concentrating on something, and I'll just pick up where I left off. No notes, no reminders, even things a week or two out.

Wouldn't trade it for anything.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby JanetG » Thu Feb 17, 2011 4:30 am

Numbness23:
I do not post very much, but wanted to add my support to you and your discision. I have had 3 angioplasty procedures. Not that I had bad results, I have very good results. My first procedure was almost a year ago at this point. Since last April, I have not lost my ability to walk, which used to happen about twice a month for a period of 2-3 days at a time. I also do not have the headaches that pleged me. There were also a bunch of minor afflictions which have disapeared over the last year.
So the question might be "why 3 procedures". I was my Dr's first patient, and we were all still learning how things were going to be done. My second procedure was 5 months after the first, I decided to go in again, because the Illiac had not been looked at, and I felt that there may have been some re-stenosis. The results were that the Illiac was constricted and a stent was put in there. I did have slight restenosis in one vein that had not been ballooned with a large enough balloon first time and he also found an additional on the left side. Round 3 was more of a tune-up and a check on the previous work. Reason for going back in was that my energy was slightly off and some numbness was returning in my arms and hands. Again 2 new area were found and the base of the jugulars on both sides were enlarged a bit more.

If you decide to go ahead with the procedure, The most important thing you have to look for is What Doctor to go and see. It is also very important to do your homework to know what questions to ask.
I have had friends go to unknown Dr.s that should know what they are doing, but yet were not quite up to speed. One saw minor improvement and the other had NO improvement.

I agree, you will see huge differents in the results from patient to patient. When and if you have the ability to get the procedure, you will never know where you fall in the range of success unless you take that first step.

Best of luck and good health wishes.
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Re: success of ccsvi

Postby Cece » Thu Feb 17, 2011 7:43 am

CureIous wrote:Lounges, public places, crowds used to drive me absolutely bonkers. Stores, trying to pick something off the shelf then someone wants to get by or other distractions, and I couldn't remember what it was I was looking for, that kind of stuff. Maddening. Don't miss it a bit. You could set off fireworks now and it wouldn't bother me. Interrupt me while I'm concentrating on something, and I'll just pick up where I left off. No notes, no reminders, even things a week or two out.

Wouldn't trade it for anything.

Amazing, isn't it. :D :D
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