Beth's Updates

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

Beth's Updates

Postby CRHInv » Thu Jan 14, 2010 5:38 pm

The below is just a copy of what I just posted in the tracking thread. I have been putting off doing this for a couple of days because I have been going nonstop taking care of things that have been put aside for the last year. I am so glad I finally did it! It is pointing out the progress to me too. (If you want more history see my complete entry in the tracking sticky on page two). I hope this helps keep others focused. This is what we all want!

(1/14/10) Two months out – Improvements: Fatigue continues to diminish. Numbness and sensitivity in hands seems to recover quicker than before, worm feeling seems to be diminishing but does reappear, arm tremors are diminishing. Here’s the big one: My Lhermitte sign is gone. Yep, really. I was really sick of that, very glad it is gone.
These things that are pretty much the same: Right now I can say that nothing is the same except my headaches. This was a bad weather headache month, maybe worst ever. I had about four headaches that I attribute to the weather and one lasted an unheard-of two days. Everything else has improved or is diminishing. I do get some tingling in my legs when I exercise. I do still have a strange sensation in my neck, is it MS or muscle issues from the procedure? I don’t know. I need to work on my left shoulder pain from the procedure.
FSS as of this update: I don’t think this is a good measure for me anymore. Let’s just say, I would like a nap, but don’t have to have one and I go to bed early and wake up early. About nine hours of sleep per night. Almost normal? What is normal???
MSIS as of this update: 39/145
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Loobie » Thu Jan 14, 2010 7:07 pm

Excellent Betty! My L'hermitte's has yet to reappear also. Don't know that it means anything that I don't get it also, but I don't get that one anymore either. That's really good to read Beth.
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Postby catfreak » Thu Jan 14, 2010 10:28 pm

Hey Beth,

News sounds good. I feel the same way you do. Have had some headaches lately too! So many thing are better, some still there but getting better. After all we are still only human.

Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby SandyK » Thu Jan 14, 2010 10:40 pm

Fantastic update. Thank you very much!
Diagnosed 1994, Self EDSS is 6.5
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Postby costumenastional » Fri Jan 15, 2010 1:44 am

Thank you VERY much.
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Postby shye » Sat Jan 16, 2010 2:46 pm

thanks--these updates are really so imp to anyone who will be deciding at some future time to have, or not, the procedure(s) done.
Glad it is going so well for you!
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Postby Sharon » Sun Jan 17, 2010 11:47 am

Good news Beth - it is good to hear of your improvements. It sounds like
you are experiencing slow, subtle positive changes. This is how my post procedure has been also. All of a sudden I realize that something has actually changed - similar to your L'Hermitte's. Sorry to hear about the headaches - I have had the same the past two months. Anyway, you are better today than you were a year ago and this is good news!

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