Hi from Jeff, re. my stent treatment at Stanford
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Joan and Jeff!
Congratulations from Slovakia!
Erika
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
- 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
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
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
- BrendaReqier
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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
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
- Loobie
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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.
And as always when I'm out there, I'm going to have them triple check the azygous area. Good report you two.
- cheerleader
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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!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.
j
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
- hwebb
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switch caffeine...ginger tea
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.
- cheerleader
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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
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
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
- CCSVIhusband
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