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How do you know when you have Re-stenosed - i think i have

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

Postby adamt » Sun Sep 05, 2010 3:49 am

thanks everyone for the replies,

As my next balloon angio isnt until December, this will hopefully give me sufficient time to re-evaluate if i have re-stenosed or not.


Esta - my first balloon angio was in Ameds - Poland, im going to Belgium for the next one as its 1/3 of the price i paid in Poland and its easy to get to = i can drive there
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Postby smokey » Sun Sep 05, 2010 4:35 am

Yep. There are going to be a myriad of different presentations. I agree with Brainteaser, the solutions are going to be equally diverse. Maybe some are not even technically possible as yet. But we are heading in the right direction, and fast, just not as fast as I/we would like.
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Re: How do you know when you have Re-stenosed - i think i ha

Postby 1eye » Mon Sep 19, 2011 4:51 pm

I want to encourage those who, like me, have probably backslid. I have it from Barrie exam, and have also lost some of my improvements (my voice is weak again, maybe 60% as bad as it was. I can't afford, this month, anyway, to get another procedure. But I am *still* on my way back to some more health. Take advantage of any improvement, however small. I am getting more out of exercise than I was in the past few years. It's getting to not be tricycling weather, but I am still learning new songs on piano (mornings are best), and I have been going to the gym or doing hand-weights or a workout at home. I'm still improving. I put my ability to increase my physical well-being with exercise, definitely partly due to my procedure (still OK on the left side). So I'm milking it for all it's worth.

After a procedure you can still be better, even if you lose some of your progress.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Good Luck in Belgium in Dec

Postby MarkW » Tue Sep 20, 2011 2:11 am

It is important not to fly (especially long flights) after the procedure, so driving to BE is a good choice. A good friend has had good results from BE but we are all different. Agree 525 gbp is a high price for scan in SE England but those of us who live in UK have one option - pay 525 or go overseas.

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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Re: How do you know when you have Re-stenosed - i think i ha

Postby Nasti » Tue Sep 20, 2011 2:47 am

After my surgery last year in June, I felt great, but I had a really bad relapse in November, with vomiting and stuff, then again in December, then in January. I went to the doc in December because I suspected restenosis, but it was nothing of the kind. Since January I have had one more relapse with tingling. The thing is that apart from the relapse in November, all the other relapses were king of mild, I wasn't in bed, I actually didn't tell anyone :))) I was just feeling stiff in my left side of the body and dealt with it with baclofen. Relapses are getting milder and milder (may this trend continue, I pray!), so if it is not re-stenoses, maybe you just have to wait. But you should definitely check out for re-stenosis.
All the best...
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Re: How do you know when you have Re-stenosed - i think i ha

Postby Cece » Tue Sep 20, 2011 8:31 am

adamt's posts are from a year ago, I wonder how he is doing?
I agree with MarkW that it's possible that flying is detrimental after CCSVI procedure, but there's no research yet on it, so I don't think we can say it so declaratively. Dr. Sclafani has stated a preference that out-of-town patients remain in town for three days post-procedure, which gives some time for rest and recovery and for any complications to have a chance to show themselves before the trip home.
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