This Is MS Multiple Sclerosis Community: Knowledge & Support

that's what happened with us, too...it's pretty shocking, huh?


would love for you to see if you can get an SWI MRI...


that makes the most sense, rokkit. We're doing the same...hoping there will be someone at Stanford soon.

(Don't answer if this makes you uncomfortable...but some of the biggest changes I noticed in Jeff pre-MS diagnosis were in personality. He became reclusive and depressed. Just wondering if that rings any bells?)

Your case is going to help Dr. Dake and CCSVI study so much. We all appreciate you stepping up to the plate to get tested and treated, rokkit. Wishing you healing and better days-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

HI Rokkit, I had all the symptoms of MS but clear MRI's and LP's for 14 years. In that time I had 11 MRI's and 3 LP's. The last MRI and the last LP came back positive after 4 consecutive relapse. So my MS was always there but it never showed until much later on in the process. If you have the symptoms of MS then I think the scans would have shown lesions eventually, hopefully sorting the CCSVI has changed that.

Best wishes for a speedy recovery! Thanks for sharing. I'm up next week and your story helps.

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Rokkit wrote

Your MRI's and your occlusions must have Dake shaking his head as to "why"? I wonder if all those collaterals were doing their job and keeping the blood from getting into the brain (oops, just remember you said the pressure gradient was severe so, maybe that doesn't apply) Anyway, you have given Dake a new set of tracking points for his ever expanding data spreadsheet. It is too bad that you cannot be tested with SWI right now - get a baseline - see if it shows any brain deterioation where the MRI does not.

Thanks for stepping up to the plate - sorry that you and your dear wife had to make the decision to go for surgery.



My daughter is waiting also - she was going to see my neurologist, but when she found out that he would be doing the standard MS neuro tests on her (which she would have no problem with), she decided why bother. She would not be diagnosed with MS nor would she be tested for MS by any neurologist with her current symptoms. Dake said the same thing until he saw her MRI/MRV.

CureIous wrote
Let's hope with further research into CCSVI we can see early intervention - SWI would be an important tool to diagnose for early intervention.

Rokkitt - get some rest - take care of yourself.
Sharon

unfortunately if you are progressive that is accurate. I am glad you had a clear understanding and were able to make a decision that felt good to you. Thanks for sharing with all of us what happened. Your particualr case is fascinating

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Hey Rokkit! Not to be a pain in the butt while you're still getting used to "the flow", but mind giving a brief update on how you've been doing? Thanks in advance...

Thanks for asking. My surgery was Oct 6. My neck and ear area was very sore for several days, but today I'm virtually pain free. I've had no bruising issues (1 plavix/day) yet, and no shoulder problems. So far so good. For several days in a row now, I'm having throbbing abdominal pains that start around noon, and get worse all day, pretty bad in the evenings. I am constipated right now so maybe it's just that.

As for MS type stuff, I have noticed some positive things. But I'm very hesitant to post any of that until I'm further out. I don't want to depress anyone by having to backtrack. It's also a little hard to tell what's real and what's mental at this point. I'm finding that the power of hope alone has a huge impact, and it's hard to separate.

You're not taking any warfarin?

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Yeah I'm taking the warfarin, I just wanted to clarify that I was only taking 1 plavix since earlier people were taking 2 and having all the bruising problems.