Hi from Jeff, re. my stent treatment at Stanford

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

Postby mrhodes40 » Tue Nov 24, 2009 8:33 am

Remember that aspirin causes tinnitus, even baby aspirin. Jeff had a pulsing whooshing sound that stoped when he held his breath and "bore down" (valsalva maneuver) This suggested a jugular problem.

Regular tinnitus is not the same. I have ringing in the ears and I do not like aspirin for that reason.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby Arcee » Tue Nov 24, 2009 9:53 am

Joan, sorry to hear that you and Jeff are going through another iteration. You certainly have shown us all that you handle these things with grace and care, but I would imagine you are quite ready to put that energy and strength elsewhere! All my warmest thoughts and hopes to you.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Sharon » Tue Nov 24, 2009 10:43 am

Positive energy and prayers from a "mile high" in Denver
My thoughts are with you

Sharon
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Postby cheerleader » Tue Nov 24, 2009 11:51 am

Thanks, guys. We're home and resting. All good. Jeff's stents looked great. Jeff's right jug is now a freeway, but his left vein will always be smaller and less open. Dr. Dake wanted to check the whole left side where Jeff was having the whooshing, and he didn't find any issues or problems with the stents but noticed as he traveled up above Jeff's left stented area, around C1, he has a sharp 45 deg. angle bend in the jug. Dr. Dake actually tried to get the area more open, by ballooning and stretching, and achieved some more flow for Jeff. Of course, he will always want it perfect. He hopes this will keep the vein more open, but said that this area may continue to be a problem. He is considering a someday "tissue removing" procedure in the area rather than a stent, since the angle is too hard to insert a stent. But he sent us on our way with a happier, less whooshing Jeff, and made us promise to come back if Jeff has any more issues with that side.

Jeff is one of the folks with extremely high jug areas that the Liberation and open surgery could never have helped. We consider it a God send that we found Dr. Dake, because he is one person who is finding ways to deal with Jeff's malformed left jugular. It may mean ballooning or stretching again, but the great news is that Jeff has regained energy and vitality and increased oxygen in his brain. And we also believe we've stopped his demyelination and gray matter injury. All worth the effort.

I've also told Jeff that I want him to spend less time working, more time exercising and enjoying life. He's been under a great deal of work stress this fall, and it's taken a toll. Not hard to slow a type A person down, but in my heart I believe lifestyle, stress management and diet will be important pieces in the search for flow.

Alex is full time now, and loving it. The nurses and doctors at Stanford are thrilled to be helping MS patients recover some of their lives....they are honored to help. And me, yeah, I'm exhausted. But I sat with a woman who was there waiting for her husband, a heart transplant recipient. We agreed, every day is a gift. She shared her sandwich and some tears with me. We thanked God for our husbands...as after she went to take her husband home and left me, alone in the waiting room...I had you guys. God is good....to be continued!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby whyRwehere » Tue Nov 24, 2009 11:53 am

PHEW! I was worried.
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Postby LR1234 » Tue Nov 24, 2009 11:57 am

So pleased Jeff is ok. Tissue removal...mmmm interesting idea. Anything that opens the veins up sounds good to me.
I am sure as time goes on and CCSVI is studied more the procedures will become more slick and new ways of helping patients will emerge.

None of this would have happened if it wasn't for you brave early stenters:)
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Postby gibbledygook » Tue Nov 24, 2009 11:59 am

Ditto. Thank God for the Dakester!
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 mrhodes40 » Tue Nov 24, 2009 11:59 am

He is considering a someday "tissue removing" procedure in the area rather than a stent


this is a great comment and it makes great sense. If the vein is being smashed by other structures it makes sense to do something with these other structures rather than just squishing stuff out of the way with a stent.

It's going to take liberation proof before that happens though! C'mon Z team!
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 » Tue Nov 24, 2009 12:00 pm

God is good, He brought you as our Guardian Angel. We are blessed to have You and Jeff by our side. Rest and be well, Mark
Plant a BIG Garden Live in the Moment
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Postby jay123 » Tue Nov 24, 2009 12:29 pm

Looking at that corkscrew jug of Jeff's I was wondering about the procedure to straighten it would leave a lot of 'extra' vein---- I understand stents where there are occlusions and bends, but I was curious about the corkscrew type.
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Postby CRHInv » Tue Nov 24, 2009 12:53 pm

I am so glad to hear this. I am so glad that Dr. Dake is still coming up with even more ideas. How did we get so lucky? (I do know this was not luck, but hard work for you guys, but still!) My whole life people have come into my life just when I need them most. I put all my TiMS friends and Dr. Dake in that category. What a lot to be thankful for this Thanksgiving, and for the rest of my life!
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 cheerleader » Tue Nov 24, 2009 12:54 pm

jay123 wrote:Looking at that corkscrew jug of Jeff's I was wondering about the procedure to straighten it would leave a lot of 'extra' vein---- I understand stents where there are occlusions and bends, but I was curious about the corkscrew type.


The corkscrew was the collateral. Jeff's jug was gone on that side 95% closed, so you can't see it. The right was crimped to 80%, and it shows up.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Tue Nov 24, 2009 1:11 pm

cheer, I'm so glad Jeff is OK !!

Yesterday I contacted an interventional radiologist at the Washington University School of Medicine. He is a full professor !!! I have an appointment with him in December when I come home from Detroit.
I went to the hospital (BJC in St Louis) this morning and met my IR's nurse. Very nice lady. We talked for quite a while. She has seen the documentary (I sent her a link) and seems very interested. I also sent her links to all the research papers, and I also gave her printed copies of Zamboni's original CCSVI paper. I think we may see some sparks fly about CCSVI in St Louis soon !!!


I hope you don't mind that I sent the text of your last long post to my IR's nurse. !! She knows who Jeff is now from the documentary. I thought your post would be interesting to her.
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Thoughts up here in Canada

Postby Chilcotin » Tue Nov 24, 2009 1:29 pm

Cheer

Thinking of you up here in Canada. Thanks for being part of the W5 documentary and bringing hope to MSers who hadn't heard of the procedure before. People are excited and hopeful <3

Erin
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Postby Loobie » Tue Nov 24, 2009 2:28 pm

Yee - Freakin' - Haw!!. Glad you're doing well. When you sent me that response last night you "sounded" wore out! Glad your home, but I'm sure you are gladder.
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