Blake's experience at Stanford

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

Blake's experience at Stanford

Postby greenwave » Thu Sep 03, 2009 2:05 pm

We just returned from Stanford earlier this week, where my husband got two stents placed in each jugular. He also did HiCy which so far had stopped his progression, but he had some lingering symptoms. It wasn't a bad experience at all and was up and about the next day no problem. He already feels better- has much more energy, walking better, no more dizziness, and no heat intolerance any more. It's pretty exciting stuff, and it feels like we've gotten a new lease on life so to speak. Thanks to everyone on this forum- we would have never heard about it otherwise!
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Postby CRHInv » Thu Sep 03, 2009 2:17 pm

Congratulations! I hope his progress continues. Please keep us posted. I just can't get enough information on this, although thanks to the terrific people on this board I can keep pretty busy just reading old posts.
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Postby mrhodes40 » Thu Sep 03, 2009 2:27 pm

Wow Greenwave, welcome!! what good news I am glad you took time to report it. Thanks for everyone here!

May I ask, When you say he did hicy when did that happen? and what made him think he needed another/different treatment? how long after hicy did he make a decision he needed something more? I am sorry to be the question police but I am very interested in the people who have done both and their comparitive experience.

Mel, another TIMS member whose husband Jamie posts here, decided if I remember right, at about 4 months ? that heat sensitivity was coming back, then had this treatment at about a year out? Jamie correct me if that is not right...... :oops: :roll:

THE REASON I want to know is that I want to know at what point we can say a member who did CCSVI treatment and who still feels "better" is past the point wherein a person doing hicy typically began to feel things slip a little.

(I am personally biased in that I think this is a better model for what causes MS vs autoimmunity but it is technically unproven at this point so it would be nice for comparison purposes)

I am at 4 months personally and still feeling a little better all the time though I am very disabled (edss6). But energy etc, all good... :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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby greenwave » Thu Sep 03, 2009 4:45 pm

Thanks, and glad to hear you have been improving, too!
He did the HiCy in December of 2008- it took from April until then to be scheduled for it. He had a rough time of it, so we wanted to do something fairly aggressive but safe. It stopped the relapses, which were coming in waves every month or so, and allowed him to heal a bit. His cognition and energy improved drastically immediately after the procedure- it was like night and day, although still not back to baseline. Some of his 'old' damage continued to exist to a certain extent and had stopped/stalled healing though, and he still had a certain amount of fatigue, some heat intolerance (again, not nearly as bad as before) with some dizziness in the AM. He did not have any further relapses, but still felt like something was slightly 'off'. He continued with copaxone throughout this, too. I ran across this randomly and started doing a bunch of reading- and the rest of the process went quickly. He figured that if he could add additional insurance or fix a problem that shouldn't be there anyways, then it was worth it to do it now. Dr. Zamboni's hypothesis is fairly complex, but I think it is the most reasonable out there- in that there is a relationship between blood flow, upregulation/dysregulation of adhesion molecules that maintain the blood brain barrier, iron reuptake problems, and autoimmunity. I figure we hopefully x'd off two major things that he's good to go! He himself is very happy he did both given the circumstances.
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Postby catfreak » Sat Sep 05, 2009 8:45 pm

Greenwave,

Great to hear your husband feels better! Please keep us updated on how he is doing.

I think once I get home I will begin to feel so much better.

Best wishes to you both!

Cat
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 CureIous » Sat Sep 05, 2009 10:33 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:58 pm, edited 2 times in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Sat Sep 05, 2009 10:36 pm

:)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby MaggieMae » Wed Oct 07, 2009 11:21 am

Greenwave,

Just reread your posts. How is your husband doing? Haven't heard from you in awhile. Interested, especially since he also had HiCy
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