CCSVI improvements - what and when?

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

CCSVI improvements - what and when?

Postby Rosegirl » Fri Jul 23, 2010 6:51 am

Most of us have seen the videos of people who have immediate major improvements after their CCSVI procedure. Now that there are probably more than 1,000 "liberati" around the world, it seems that perhaps the majority don't get those impressive results, especially when those who have restenosed are counted. Or maybe their improvements were gradual and they forgot to post for the rest of us?

My procedure was 16 days ago, and, other than my feet no longer being purple, so far, there's nothing else to report. My only "MS" symptom is that I have to "wall walk" or use a scooter when I go out. Maybe my balance is a tiny bit better, but it's barely noticeable, at least so far.

If you've seen gradual improvements since your procedure, would you please post for the rest of us? Be as specific as possible -- i.e., after 3 weeks, I could walk 50 feet with my cane and by 2 months I could walk six blocks without a cane.

Since this kind of procedure is so new, we don't have any long term data -- all we've got is some postings and videos of a few people that saw quick results. Whatever changes you've seen, we'd all be grateful for your input.
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Postby thornyrose76 » Fri Jul 23, 2010 5:45 pm

Have you seen a physiotherapist?
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Purple foot

Postby eveable » Fri Jul 23, 2010 8:07 pm

Thanks Rose for telling me that your feet are no longer purple. I have one purple foot, my right. I have had a doppler done on it and both legs 3 times now. Strange that Canada will pay for that but not for an angioplasty. When the last Doppler was done they could not find a pulse in that foot. Which means I have to get out of here and have an angioplasty done or I will lose that foot. Last winter I noticed a red spot and it turned out to be a strep infection. No cut, no break in the skin, just an infection appearing out of no where.
I know that the people who are showing improvements are going to physiotherapists. Have to get those muscles back in shape.
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Postby L » Sat Jul 24, 2010 4:21 pm

You know, those before and after videos, most are uploaded in pairs after treatment. So, I suppose, there are many people who don't feel immediate improvements and don't upload any video. Especially given that there are 18 'before' videos, many of which are almost two months old, which haven't got an 'after' video uploaded. So, yes, you're quite right, the likely effects of the procedure shouldn't be judged by those videos alone.

Some Doctors say wait three to six months for improvements, no? So here's hoping that you'll see more improvements in the near future.
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Re: CCSVI improvements - what and when?

Postby dania » Sun Jul 25, 2010 5:18 am

Rosegirl wrote:Most of us have seen the videos of people who have immediate major improvements after their CCSVI procedure. Now that there are probably more than 1,000 "liberati" around the world, it seems that perhaps the majority don't get those impressive results, especially when those who have restenosed are counted. Or maybe their improvements were gradual and they forgot to post for the rest of us?

My procedure was 16 days ago, and, other than my feet no longer being purple, so far, there's nothing else to report. My only "MS" symptom is that I have to "wall walk" or use a scooter when I go out. Maybe my balance is a tiny bit better, but it's barely noticeable, at least so far.

If you've seen gradual improvements since your procedure, would you please post for the rest of us? Be as specific as possible -- i.e., after 3 weeks, I could walk 50 feet with my cane and by 2 months I could walk six blocks without a cane.

Since this kind of procedure is so new, we don't have any long term data -- all we've got is some postings and videos of a few people that saw quick results. Whatever changes you've seen, we'd all be grateful for your input.

I had my first procedure on June 23. Got immediate improvements, such as able to sit straight in my wheelchair, lift both arms straight up, vision was amazing like HD, mood much better, spasms gone from the waist up and 50% reduced from waist down, bladder improved. No changes with my legs. These improvements that others could not see were wonderful for me. 1 week later all improvements vanished. Returned to Bulgaria and had the procedure redone 3 weeks late July 14. The vein that had a stent had stenosed past the stent and had blood clots in the stent. The other 2 veins had restenosed and were now closed 99%. Originally these 2 veins were closed 70% and 80%. I thought I would recapture the improvements of the first procedure but that did not happen. Only my visions has improved but not to the degree of the first time. I also hope with time I will see more improvements.
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Improvements not certain

Postby MarkW » Sun Jul 25, 2010 8:25 am

Hello Rosegirl,
Why do you think you have any certainty of improvements ? Unless you know the extent of your nerve damage it is impossible to predict any repair the body might be capable of. If you have nerve damage (black holes on MRI) repair is impossible and you are hoping that brain plasticity will help to regain function. The 3-6 month time period is arrived at from time to remylinate if the myelin sheath stops being attacked after de-stenosis.
It is great that a very few people get significant improvement immediately but that is not the norm and it is very difficult to explain from an MS disease point of view.
Personally I will look for trends in my symptoms after 3-6 months and not comment until then. No running commentry from me except to say both my feet were the same temperature/colour by the morning after my de-stenosis (4 major veins).
Being realistic is tough...........but so is 19 years with MS.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Changes

Postby Rosegirl » Sun Jul 25, 2010 10:45 am

Hi, Mark,

In my case, stiffness and balance issues have me "wall walking" around the house and using a scooter when I go out. It's been that way for the last five years and I've never had any other symptoms. But several times during those five years, I could walk perfectly!!!! Each of those episodes lasted one to five minutes.

Being an internet/CCSVI junkie, I think that, along with the blockage in the azygous that was treated, I also have a(n untreated) valve problem. I think that would explain such a huge difference that happened then disappeared so quickly.

That's my story and I'm stickin' to it. (Until someone gives me a better idea).
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