How do you define CCSVI success?

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

Postby bluesky63 » Fri Apr 22, 2011 10:56 am

It's not just sudden. It can be unrelenting squeezing, like the squuezing around the rib cage. The strange thing is that it really is llike a compression bandage pulling tight. -- hence "banding," I guess.

I detest it in particular on my throat, where it feels like I am slowly being strangled by invisible hands. For years.

Rosegirl, how on earth can they say two days? How can they say anything at all when this is so new? What if the big benefit is that people have no progression, which you can't even tell for an extremely long time?

And anyone who has deconditioning from weeks, months, years of not using a body part is definitely going to need time to build that muscle back up assuming flow has been restored. I would find a patient PT to work with. :-)
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Time

Postby fiddler » Fri Apr 22, 2011 11:34 am

Rosegirl, my first improvements didn't start for two weeks, then continued quite quickly over two months, at which time they MOSTLY plateaued (I say mostly because I have seen a few more "small" things since then). Your IR doesn't know what he/she is talking about. Take a look at the timeline graphs on http://www.ccsvi-tracking.com and you'll see that many improvements take months to happen. And in my case, since I have SPMS, I was only hoping to arrest the progression, so even though I still have my bad days and still have significant symptoms, I feel that I am definitely "un hombre con suerte" - a lucky guy. Only time will tell if the progression has truly been arrested, but in the meantime I am enjoying the respite from some of my worst symptoms.

The YouTube liberation videos are great to see and give hope, but people with progressive MS who have had years of damage should be realistic.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Rosegirl » Fri Apr 22, 2011 12:34 pm

Oh, Fiddler, would you please be my role model?

Also, could you be more specific about what changed and when?

For example, most of us need physical therapy, but I don't think there's any point in starting it for now because I'm just too stiff to make it worth the time and money!

If I could just use a cane instead of a scooter within the next week, I'd sure be a happy camper.
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Changes

Postby fiddler » Fri Apr 22, 2011 1:52 pm

Rose, this is a quick summary of what i remember about my changes (follow my blog starting early May, 2010 for details and greater accuracy):
    Fatigue: this has been my biggest change. About a week after returning from Poland I noticed that I wasn't as fatigued, that special MS fatigue I expect you know well. Sometimes over the next few weeks or so I would say that my MS fatigue was 80% reduced. For me this was the biggest improvement in terms of change to my quality of life.
    Mobility: Within a month of the procedure, I stopped using my cane except for longer walks, to provoke sympathy at airports, or when i was reminded by my physiotherapist that I should use it to help me learn how to walk right again. My EDSS has gone from 5.5 to 4.5, but I still have a bad limp and can't go more than a few hundred meters without a rest. I have days when my walking is worse, but sometimes that's caused by too much red wine... :-)
    Balance: My balance got better a few weeks after Poland and has stayed much better all along (again, except when I've had too muh wine).
    Strength: My left side has been weak since early in my MS, but I did see a noticeable improvement a few weeks after the procedure when I did my regular workout. While this varies considerably day-to-day, I would say that it has only improved a little more in the months since then.
    Bladder function: I was already on Flowmax when I had the procedure and I just stayed on it, it was hard to tell if any improvements were due to the procedure or the medicine. However, I stopped Flowmax a month ago and most of my improvements remain.

I should mention that I stopped my betaseron injections last September (my liver enzymes were up). The final thing I want to mention is that I have been exercising all along, and seeing my physiotherapist on a regular basis, both to benchmark my progress and to monitor my exercise regime. I believe you should start physio right now. Even if all the damage suddenly went away (and it would be foolish to expect such a miracle, I believe), you still have years of muscle atrophy to overcome. It will take a long time to build up those muscles again to whatever level the continuing nerve damage will allow (so thinking you can get rid of your scooter soon is highly optimistic), but the time to start exercising is now.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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My full story is on web

Postby MarkW » Fri Apr 22, 2011 2:02 pm

I gave details of my therapy and changes in my Daily Telegraph article, Rosegirl. The weblink is after my signature. After 10,20,30 years of MS damage we should not expect our nerves to heal and function return to pre MS times. Do not expect your IR to know about MS and the possible impact of balloon venoplasty.

Reality is that slowing or stopping progression is good for long time MSers.

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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Postby Stayfit » Fri Apr 22, 2011 7:02 pm

Both my IR and neurologist agree that my physical training has really boosted my continued improvements post procedure. No longer use walker in the house but still need outside. Most recent improvement Post procedure: stable enough to use treadmill and now up to 8 minutes hands free no holding. Atrophied muscles need time to rebuild. :D
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