Post if CCSVI treatment did NOT work for you
Post if CCSVI treatment did NOT work for you
We hear of so many successes, but just how many are like me that had blockages treated and are the same as before?
No, I have not re-stenosed.. ultrasound the next day confirmed that.
No you are not the only case.
I had liberation treatment 2 months ago and I did not improve. Truth to tell I was not expecting to improve as my MS is very mild and going for the procedure I was free of any symptoms. But after it I got numb hand and it stayed like this till today. 2 weeks ago I had a mild relapse: my hand got more numb, but also numb toes, stiffness in the knee and numb torso, all the symptoms on the right side (I have stent in right jugular).
And I have no restenosis, the boold flow is correct on both sides - I had checkup appointment and ultrasound done by Simka last Tuesday.
I am hoping that it all just needs time to settle down and that the symptoms/relapse was caused by my old lesions. Time will show.
- esta
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maybe just maybe, not having improvements right away could mean everything will slowly get better as time goes on...remember give it 3 to 6 months...where as i had great improvements within 3 weeks but by the 4th, things went downhill...this is only conjecture, but i'd be waiting if i were you, with an optomistic outlook for every tiny tidbit...but, thats only me, and i won't hesitate to get it done again, this time, hopefully with a stent.
Esta this is a post where people who have not experienced improvements after their procedure can give us feedback. I hope it does not regress into posts trying to convince them they are wrong.esta wrote:hi pklittle
maybe just maybe, not having improvements right away could mean everything will slowly get better as time goes on...remember give it 3 to 6 months...where as i had great improvements within 3 weeks but by the 4th, things went downhill...this is only conjecture, but i'd be waiting if i were you, with an optomistic outlook for every tiny tidbit...but, thats only me, and i won't hesitate to get it done again, this time, hopefully with a stent.
It seems to be so true, what he says. MS = CCSVI + something else (perhaps more than one).
Crap.
Also Dr Simka's remark at the Hamilton Workshop last fall that possibly
this is altering the angiotension system for the immediate benefit was
interesting.
Why the procedure doesn't help all is really disheartening.
We have a lot of stickies already, so maybe it's not practical.
I think your suggestion is super important. For those trying to decide, I think that knowing the negative is almost more important than the positive at this point. Most of us are fairly up on what the procedure CAN do potentially, but it is important to know in what ways it is not helping some, and also in what ways making some worse.
This thread might very well soon be off the front page, so no one will see it--a sticky they will see.
- silverbirch
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sticky
Silver
i do believe in ccsvi in ms patients and i have seen enough evidence in the press and on videos to see people go from wheelchairs to walking.
for those with severe ms - most if not all will jump at the chance to have the ccsvi procedure. but for those with less disability, that choice may not be so clear.
it is good to know negative outcomes as well. then all people can make a choice as to whether the procedure is worth the risk of actually becoming worse when one was not too bad off to begin with.
it is a choice all of must make for ourselves and i hope that everyone will respect another's choice.
- Vhoenecke
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Thanks,
Val
numbness
Clotting (thrombosis) is a real possibility, and may be present in the dural sinuses, the veins in the brain. These appear to resolve over time with the new and improved flow, but until they go, a person may not see many changes.
Thanks,
Gwen
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