Hi from Jeff, re. my stent treatment at Stanford

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

Postby cah » Thu May 13, 2010 12:55 am

Placebo, eh? :twisted:

I'm so happy to hear this wonderful news. Though I must admit that it isn't really a surprise. :)

All the Best

Cah
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby ErikaSlovakia » Thu May 13, 2010 1:06 am

Joan and Jeff!
Congratulations from Slovakia!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby PCakes » Thu May 13, 2010 7:13 am

and with that note... you couldn't see it but i did a very happy dance around my room... :D Congratulations!!!!! Good things.. Good people !!
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Postby Sharon » Thu May 13, 2010 7:21 am

Congrats to you and Jeff and to Dr. Dake!

No new lesions - what wonderful news. And, no enhancement - I can't remember, but didn't Jeff have enhanced lesions on his pre-op MRI? If he did, and now there is none ---WIPEE!

The Stanford stenters are starting their one year trek back to California---to my knowledge, none of us have reported any major setbacks....so, I think we will be reading about positive follow-up postings similar to Jeff's. Keeping my fingers crossed for everyone.

Sharon
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Postby HappyPoet » Thu May 13, 2010 12:16 pm

Jeff and Joan,

I am soooooo happy for you!!

You are both such an inspiration for so many people all over the world.

~Pam
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Postby lavmac56 » Thu May 13, 2010 12:44 pm

Thank you Jeff for posting this. And, Thank you so much for being so generous with your wife's time and help. What a gift she is to all of us, You and your son are lucky indeed. Keep getting better and keep us posted as time rolls on.
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Postby coach » Thu May 13, 2010 3:28 pm

Great news Jeff and Joan. Little late getting on the computer and getting up to speed. How can we begin to thank you guys?
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Postby BrendaReqier » Thu May 13, 2010 3:55 pm

Jeff and Joan.....so so so very happy for the 2 of you. You have both touched so many lives in ways that you many never completely see, but they are good changes.

I'm a little nervous about the pain during the procedure, I have terrible head aches and can usually tolerate quite a bit, but I guess it's just wearing me down. I may have to go abroad for treatment, but it will only energize me and better lift my brain fog to fight for all my MS brother's and sisters.

Thanks again for sharing your lives with us!

Brenda
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Postby Loobie » Fri May 14, 2010 9:18 am

Great news Jeffrey! I go on July 13 for my one year. It's funny you say he still deals with headaches somewhat. I have been too, but only since my lower stent area has been a little tender (it's been that way for a bit now). So I expect the same thing! I think I'm flowing well but just am dying to make sure the flow is good.

And as always when I'm out there, I'm going to have them triple check the azygous area. Good report you two.
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Postby cheerleader » Fri May 14, 2010 9:56 am

Loobie wrote:Great news Jeffrey! I go on July 13 for my one year. It's funny you say he still deals with headaches somewhat. I have been too, but only since my lower stent area has been a little tender (it's been that way for a bit now). So I expect the same thing! I think I'm flowing well but just am dying to make sure the flow is good.

And as always when I'm out there, I'm going to have them triple check the azygous area. Good report you two.


yeah, Lew- these are new headaches since last November...like chronic cluster headaches, they come and go. Dr. Dake has taken him off caffeine and making him hydrate more (which is huge, since Jeff became a coffee fiend in recent years, to deal with his MS fatigue), and he's feeling really good today --no headache!...maybe with new blood flow, the vascular affects of caffeine have been stronger? I have no idea. Dr. Dake is on it. The good news is that his brain and stents look good, his energy and symptom relief are still here, so- onward! Certainly never dull with you guys--hope you get great news in July!
j
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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switch caffeine...ginger tea

Postby hwebb » Fri May 14, 2010 3:19 pm

I reckon the porous blood-brain barrier makes an MSer more suseptible to the effects of caffeine. Anyway, I gave up caffeine too as I get too meany headaches when I consume it. I switched to ginger tea (just a slice of fresh ginger...lasts several cups). It has the benefit of improving circulation.
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Postby cheerleader » Tue Nov 23, 2010 4:58 pm

Wanted to bump this for new visitors who haven't read Jeff's story. It's important to understand all of the follow-ups that have been necessary, and why I continue to say patients must "go local." I also wanted to bump this thread for Jeff, who promises to come on and update during our Thanksgiving break. So much to be thankful for.

He's doing really well. 19 months post original procedure. No MS progression, no new lesions, no relapses. Still great energy. No heat intolerance, less spasms, less urgent bladder. The daily headaches ended over the summer. We still have no idea why they began, or why they ended. Still has the whoosh, only when lying down at night. Jeff is still the first one out of bed in the morning, last to bed at night...he can barely remember the crushing fatigue of the past.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CCSVIhusband » Tue Nov 23, 2010 5:45 pm

LOVE THE STORY (AND THE RESEARCH).

We are ALL so thankful for you and Jeff this Thanksgiving!

Very good stuff here to any newbies! Cheer's posts are the best (along with a few others)
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Postby garyak » Tue Nov 23, 2010 6:34 pm

Inspiring update - wishing him continued reprive.
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Postby Drury » Tue Nov 23, 2010 9:47 pm

Wonderful news!!!!!!!

Thank you Cheer.

Drury
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