What To Do After Stents

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

What To Do After Stents

Postby thornyrose76 » Sat Dec 26, 2009 8:03 pm

I have one thought: IF and WHEN i get stents put in my arteries, if found to have a blockage, what happens next, is it possible to rehabilitate myself? I'm in a wheelchair, or is there no clear answer on this one, no one really knows? 8O [/b]
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Postby bestadmom » Sat Dec 26, 2009 8:28 pm

It's your veins, not arteries that are occluded and there's no guarantee that if you get treated, you'll get stents. You could get balloon angioplasty.

There is no guarantee of any relief or stopping of progression. This is experimental.

Read the stories of the people here who posted about their improvements. None have been wheelchair-bound, but all feel like the progression has stopped. The interventions only started in the US in May and in Poland in October, so it is too soon to tell what the long term effect is.

GiCi, who had the balloons from Dr. Zamboni felt like he was going downhill after a period of time, and recently had the restenosis fixed with another balloon angioplasty and had immediate improvement.
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Wheelchair bound

Postby fiddler » Sat Dec 26, 2009 10:05 pm

Actually, bestadmom, I've read at least one story in one thread somewhere that a wheelchair bound person is starting to walk again after treatment. However, in general you're right: the CCSVI theory isn't saying that getting rid of the CCSVI gets rid of permanent damage, rather that the conditions for making it worse are stopped. That's why, the theory would say, that RRMS patients should expect the greatest recovery: they aren't as likely to have permanent brain damage.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Loobie » Sun Dec 27, 2009 8:32 am

Ted wins the prize for not missing the point! Just kidding on missing the point thing, but honestly, if you're car was under assault from getting sprayed with salt spray and was a rust bucket, you could move it away from the salt spray and quit new corrosion. However, you'd still have a rust bucket where the damage would not fix itself; and quite possibly could still have to do more since once the 'trigger is tripped', the damage will keep happening until the foundation is repaired. Maybe MS is somewhat like that too.

What we need to do now is find a body shop that fixes damaged central nervous systems!
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Postby codefellow » Mon Dec 28, 2009 10:04 am

"What we need to do now is find a body shop that fixes damaged central nervous systems!"


Ummmm.......stem cells?
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Postby Loobie » Mon Dec 28, 2009 10:34 am

Ummmm? Point me in the right direction. As far as I know there isn't a commercial method for that yet. Do you know of one that is?
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Postby bluesky63 » Mon Dec 28, 2009 11:35 am

Hi there. Don't take this the wrong way, but why wait for stents to do something about rehab? :-)

I have needed a wheelchair for many years, so I'm speaking from personal experience here -- not just in theory. Of course I realize that my experience may not be yours. But I encourage people who use mobility equipment to be strong on their own behalf. I have seen that people have a tendency to give up on those of us who have significant disability. Don't wait for someone else to come through for you because it may not happen -- we have to do it for ourselves.

Right now, it might help to think -- What would be different in your life this week if you had stents? Why wait to make those differences? The stents alone can't make all the differences -- with those of us who also have major disability to overcome, we're still going to have to deal with strengthening ourselves, and it's not too soon to start making those things part of our lives!

See if you can find a therapist who will work with you and start getting you stronger *now*. Then you'll be even more prepared for the procedure!

I don't mean to sound dippy. I just know from cold experience that so many times we end up having to do things ourselves and it makes sense to plan for it in the first place. Rehab, improvement, maximizing your situation -- always possible whether or not there are stents. Stents could certainly help vein blockage but will not address all the other issues in our life/body that will still remain significant and will still need repair. Not to be a downer at all -- hoping to be realistic and encourage action *now*! :-)

I have also been reading and rereading people's experiences trying to find more severely disabled people to find out how they have fared. I wish the tracking was set up in a way to quickly assess this since I get scrambled so easily. But I haven't seen very many with an azygous issue.

Anyway - - - sorry to ramble! Just wanted to express sympathy and encourage you to consider rehab now and not wait for stents -- they will help when they come, but you could be improving before that, thornyrose! You can do it! (I'm encouraging both of us!) :-)
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Postby thornyrose76 » Mon Dec 28, 2009 1:13 pm

thanks for the kind words, definitely food for thought. I am still trying to d leg lifts and 4 times a week I do upper body, via 8lb weights and thera-band. So not giving completely in to it. :lol: :wink: I'll try to keep positive, too!
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