Hi from Jeff, re. my stent treatment at Stanford

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

Postby gibbledygook » Wed Jul 22, 2009 8:19 am

Good to hear the operation went well. I wonder how a balloon can thin out the lining...I guess it sort of smoothes out any wrinkles.

Hope Jeff feels fully recovered soon.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Jamie » Wed Jul 22, 2009 4:44 pm

Good stuff Jeff!

Interested to hear how things go on.
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Postby cheerleader » Wed Sep 16, 2009 12:52 pm

Four months out from original stent procedure-
two months out from ballooning procedure to thin the lining of left stent.
Off of blood thinners.
No relapses, no progression

No more heat fatigue, no more debilitating MS fatigue or brain fog
-Jeff did the red carpet at the Emmys on Saturday in a black wool tux, 95 degrees in full sun, for one hour of interviews. No problem. He said (after the 4 hour ceremony and 2 hour ball) I feel different this year, I'm tired, but not in that MS way...I don't feel that exhaustion anymore.
-He's working on 4 projects simultanously now...too busy to post, but he sends his regards. Watch "Georgia O'Keefe" on Lifetime this Saturday, starring Joan Allen, to hear his beautiful orchestral score.

Much better sleeping. No snoring or apnea, relief of spasms
-Jeff reports that he is dreaming again. He had stopped, and didn't even realize it. The dreams are back.
-He wakes up refreshed, and ready for the day. No more lying in bed, unable to move or get up.
-Jeff used to spasm thruout the night (we had to get a non-motion transferring mattress when he got MS, cause I wasn't going anywhere) No more spasms, just an occasional tiny tic. He sleeps like a baby. Me too.

Much less leg pain-
Jeff used to have daily burning and tingling in his calves. Now it is once and awhile, usually if he is stressed out from work, or doesn't have time to exercise. Most days it is gone.

Better color, appearance, mood
-So many friends and colleagues have commented on how healthy Jeff looks. How alive his eyes are again, how engaged he is with life. I notice this, too. His sense of humor is back, his goofy joy, his energy.
-He had a late night meeting in town last night, long drive, long meeting...came home and hung out with me and our son, still full of energy. He used to be passed out by 10pm, out cold. Now he's puttering around until midnight or so, reading, and up and going by 7:30am. Completely changed.

We remain upbeat about all of this. Jeff continues to take his copaxone, that's his call, and I'm supportive. He takes a bunch of supplements from the endothelial health program, and exercises pretty regularly. He's added some meat and cheese back into his Swank diet, since he's been feeling so good. And a glass of wine is OK again!

Again, Jeff was early in his disease, and we need to remember that results may vary, but for him, this has been a life-changer.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Wed Sep 16, 2009 1:00 pm

This is awesome Joan!!

I have been waiting to see the Georgia O'Keefe movie! He did that! I can't wait to see it and enjoy his beautiful score. Now am really excited to see it.

I feel better today. Had a small salad last night and a small glass of cranberry juice to help with the 4.2 INR.

Tell Jeff we will be watching.

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 mrhodes40 » Wed Sep 16, 2009 1:46 pm

What a wonderful update, and how great to hear how well everyhting is going and how well people say he seems. A wool tux, hour long interviews in heat. That says it all right there.
yeah! :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 skydog » Wed Sep 16, 2009 2:31 pm

Great update !!! Gives us all hope. Keep it up Jeff. Peace, Mark
Plant a BIG Garden Live in the Moment
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Postby CRHInv » Wed Sep 16, 2009 3:34 pm

Thanks for the update! It is so nice to hear how this is all working for you guys. Just amazing!
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Postby Ana » Thu Sep 17, 2009 4:15 am

I'm also glad for the good news. That gives hope to all of us. :D
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Postby catfreak » Sat Sep 19, 2009 8:03 pm

Joan,

I just finished watching Georgia O'Keefe and you tell Jeff the music was beautiful!! He is so talented.

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 cheerleader » Sun Sep 20, 2009 8:56 pm

catfreak wrote:Joan,

I just finished watching Georgia O'Keefe and you tell Jeff the music was beautiful!! He is so talented.
Cat


thanks, Cindi! That was a tough project for Jeff, he did it pre-stents, and had some difficult producers to please...but he's proud of how it turned out. He just went out and played his first live gig in over two years this weekend, and was so happy to have the energy to perform in public again. He's so appreciative of everything now.
I'm hoping you're feeling better and have the INR and BP stuff under control. Sending good thoughts-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Mon Sep 21, 2009 7:26 am

Great stuff.

I'll post a 10 week update for Mel after we get back from the follow up on......THURSDAY!!

Dun dun duuuuuun!
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Postby cheerleader » Fri Nov 06, 2009 7:58 am

Six month update...I'll get Jeff back on here once his shows are done for the fall season. He's been working like crazy this year.

Jeff says his energy levels are still improving. He wakes up really awake and is able to work all day, no problem. If he does get tired, it's like tired for folks without MS...a quick cat nap or rest lying down, and he's back up and refreshed. He said he used to panic every morning...freaking out about how much he had to do and the limited amount of hours he had awake each day....now he doesn't have that sense anymore.

One new weird development is a thumping/whooshing in his left ear. He saw the ENT this week, and it's the jugular...since a valsalva manuever stopped it. His doc says it could be inflammation, pressure on the eardrum or faster jugular return...at this point we just don't know. It's bugging him at night, when it's quiet and he's lying down (when the jugulars are really working.) Jeff's not freaked out (I am) but it's strange that it's happened at 6 months out. He's never had this before.

The problem with being first is that we just don't know what to expect...maybe someday the docs can say there is a pressure change as the BBB seals up at a certain point and venous return is increased, but today, we just don't know. We hope the tinnitus goes away...but it may not, and Jeff's a musician...will it drive him nuts? These are the thoughts that keep me awake.

So, you can understand the conundrum. Jeff is still glad to have energy, improved health and no progression of his MS in the past 6 months. But there is much about stenting the delicate and crowded neck area we still do not understand. As we like to say....stay tuned! You'll get to see him/hear him talk about all this in the CTV documentary to be aired later this month-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Fri Nov 06, 2009 8:09 am

cheer, what is the CTV documentary ??? I know this has probably already been posted somewhere, but I am a relatively new Thisis MS member and have not read all the threads and links. Will this documentary be on TV somewhere ????

Thanks,

ozark
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Postby cheerleader » Fri Nov 06, 2009 8:15 am

ozarkcanoer wrote:cheer, what is the CTV documentary ??? I know this has probably already been posted somewhere, but I am a relatively new Thisis MS member and have not read all the threads and links. Will this documentary be on TV somewhere ????
Thanks,
ozark


The medical dept. of Canadian TV is now producing a doc on CCSVI, to be aired in Canada later this month, with possibilities of worldwide airing later. We'll let you know when and where as we find out.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Fri Nov 06, 2009 8:37 am

cheerleader wrote:So, you can understand the conundrum. Jeff is still glad to have energy, improved health and no progression of his MS in the past 6 months. But there is much about stenting the delicate and crowded neck area we still do not understand. As we like to say....stay tuned! You'll get to see him/hear him talk about all this in the CTV documentary to be aired later this month-
cheer


Amen on that sister. The crowded neck area is, I personally believe, more of an unanticipated issue than was maybe thought when embarking on this journey. I know it's caused me and Marie and others some major issues. It's just so damn tight in there! Hope the ear thing goes away. That would not be nearly as high on my personal list of "oh shit" things as it would be for Jeff whose ears are tools of his trade.
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