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Am I restenosing?

Posted: Sun Sep 18, 2011 10:33 am
by fiddler
Over the last few weeks I've had a few days where I felt tired during the day and had a nap/laydown, even twice one of those days. Now, I know that's a long way off from what it was like before liberation when I had a deep, devastating fatigue that required me to take at least a couple of naps every day, sometimes as many as four in a day. However, for a while the other day I also had a return (for the first time in a year) of that feeling of walking on Jupiter (like huge gravity pulling down on all my limbs). Given the EMMC imaging I had done a few months ago telling me that I still have some indications of CCSVI, I'm beginning to wonder if I might need to be retreated sometime in the near future. After 16 months of living a much better quality of life, I don't want to let things go too far downhill again before doing something about it.

If it does appear that I am restenosing, where should I apply to go to be retested and, if appropriate, treated? Rhode Island, because they're allied with the facility in Bangor? Albany with Dr. Siskin? Somewhere else on the east coast? If anyone out there has advice or can tell me of their experiences, I'd appreciate hearing about it.

Re: Am I restenosing?

Posted: Sun Sep 18, 2011 10:47 am
by Cece
There are a few facilities where intravascular ultrasound is used. I think that's the only way to get the most complete treatment. Dr. Cumming in Minnneapolis, Dr. Sclafani in Brooklyn, and there may be others.

Sixteen months is a very long time for the effects to have lasted. I've heard six months as a common time for restenosis to occur, so sixteen is far outside of that.

I would also say don't go anywhere where the treatment is aggressive, which may risk more complications. You're playing from a good position right now, you don't want to lose what you've gained. This fits with going somewhere where IVUS is used, since IVUS allows for the most care possible in selection of balloon size.

Best wishes that a second procedure, if you need one, is as successful as the first one.

Full Diagnosis Needed

Posted: Sun Sep 18, 2011 1:47 pm
by MarkW
Hello Ted,
I agree with Cece, time for a complete diagnosis (IVUS and venogram). I also advise anti-coagulatants and no flying for 20 days after the procedure to be very safe. The procedure has developed since Cece/you/me first had our ballooning.
Kind regards,

Re: Am I restenosing?

Posted: Mon Sep 19, 2011 3:51 am
by fiddler
Thanks, Cece and Mark