Rokkit goes to Stanford

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

Postby cheerleader » Fri Oct 09, 2009 10:11 am

Rokkit wrote:i But when my wife and I were sitting there looking at pictures of my jugulars, it all changed. They were bad. They went down to almost nothing on both sides.

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

Yes I am very interested to see if the OCB go away at some point. It seems possible. It's never happened but as Mark said, CCSVI has never been addressed either. I am very wary of things that seem to good to be true, but it is fun to think about the possibility of ten years from now having no OCB and still no MRI lesions. Although at this point I wouldn't be surprised if SWI told an altogether different story of my brain.

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

I think what I would like to do is wait for a neurologist to come on board who is working with Dake and Zamboni and start there.

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Fri Oct 09, 2009 10:22 am

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.
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Postby magoo » Fri Oct 09, 2009 10:48 am

Best wishes for a speedy recovery! Thanks for sharing. I'm up next week and your story helps.
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.
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Postby Sharon » Fri Oct 09, 2009 10:57 am

Rokkit wrote
That's exactly how mine looked on both sides. Lots of collaterals. Dr Dake said my occlusions leaned toward being more severe than most he's seen, which seemed odd given my light symptoms. He would have expected all the heat sensitivity and fatigue issues which I don't have


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.

I think what I would like to do is wait for a neurologist to come on board who is working with Dake and Zamboni and start there.


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
As far as I'm concerned, people like your daughter and Rokkit are what it's all about, early intervention

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
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Postby mrhodes40 » Fri Oct 09, 2009 5:10 pm

If it is MS, to me it's obviously progressive MS, so going to a neurologist at this point will result in one of two possible outcomes: do nothing or do nothing


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 :D
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
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Postby radeck » Sun Oct 18, 2009 8:32 pm

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...
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Postby Rokkit » Mon Oct 19, 2009 9:02 am

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.
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Postby Loobie » Mon Oct 19, 2009 11:29 am

Rokkit wrote: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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Postby Rokkit » Mon Oct 19, 2009 11:42 am

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.
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