A few pics from my scan by Dr. Haacke
- beechwood297
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A few pics from my scan by Dr. Haacke
I am still waiting on the 3-d images from Dr Haacke, but these scans are pretty telling. For those who don't know, I only have one internal jugular.
If you look at the very bright part of the top of the jugular, then go about one inch down, you can see where the bone from the vertebrae is pinching the jugular. There is also more narrowing about two-thirds of the way down, which I didn't know about before this scan. The third scan just shows a good view of the lone jugular.
If you look at the very bright part of the top of the jugular, then go about one inch down, you can see where the bone from the vertebrae is pinching the jugular. There is also more narrowing about two-thirds of the way down, which I didn't know about before this scan. The third scan just shows a good view of the lone jugular.
- ozarkcanoer
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- bibliotekaren
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Oh we know all right, and are fascinated to say the least seeing this future textbook example of how a person without a MS dx can exhibit the same symptoms and have the same mechanical limitations (times 10) as the rest of us. Absolutely incredible. Is there any talk about fixing that? Can it be stented in that spot with the bone right there? I'm assuming you've contacted Dr. D? Keep us updated and thanks very much for the pics they are def worth a 1,000 words...
Mark.
Mark.
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
- beechwood297
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My most pressing symptoms are pressure at the base of my skull, fatigue, brain fog, and every morning I feel like death (headache, nasea).
No, I have no transverse sinus on the left (right on the scan).
I have not contacted anyone, although I would be very interested in Dr. D's opinion.
Unfortunately, I am going through a divorce in less than a month, and then no more health insurance...so I am screwed.
So it goes
Joel
No, I have no transverse sinus on the left (right on the scan).
I have not contacted anyone, although I would be very interested in Dr. D's opinion.
Unfortunately, I am going through a divorce in less than a month, and then no more health insurance...so I am screwed.
So it goes
Joel
- ozarkcanoer
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beechwood
---incredible images...thank you for sharing. It seems to me that Dr. Haacke would want to keep you under "his wing" so to speak. Maybe he will be able to help you.
So sorry about your personal situation -- it is during these times it is important to remember that life does go on ----and, to lean on your friends --- we are here for you.
Sharon
---incredible images...thank you for sharing. It seems to me that Dr. Haacke would want to keep you under "his wing" so to speak. Maybe he will be able to help you.
So sorry about your personal situation -- it is during these times it is important to remember that life does go on ----and, to lean on your friends --- we are here for you.
Sharon
- Arcee
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Joel, thank you for posting. I am sorry to hear that things are difficult for you personally right now. I am wondering if you could get some traction with someone even without insurance as your physical situation is so unique. No doubt it would captivate these vein guys so my be with a try.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Oh Joel, your situation is really difficuilt. I am sending you some energy.beechwood297 wrote:My most pressing symptoms are pressure at the base of my skull, fatigue, brain fog, and every morning I feel like death (headache, nasea).
No, I have no transverse sinus on the left (right on the scan).
I have not contacted anyone, although I would be very interested in Dr. D's opinion.
Unfortunately, I am going through a divorce in less than a month, and then no more health insurance...so I am screwed.
So it goes
Joel
I was having the same symptoms in the morning: strong headache and nausea.
I did not want to wake up, I did not want to get up, I did not eat any breakfast.
Title your bed 15 cm. It helped me at least from this. I still have light headache - not always, especially on the left side, I still feel little bit drunk - not always, I EAT MY BREAKFAST after so many years!!!
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
- beechwood297
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Thank you all for your kind words of support.
For the record, I tried sleeping in a recliner, that kept my head elevated. Not only did I not sleep well, but I had the same symptoms regardless.
And now new symptom has just reared it's ugly head. Heart palpatations are now occurring for the first five minutes when I lay down. Not a pleasant feeling.
Good wishes to all,
Joel
For the record, I tried sleeping in a recliner, that kept my head elevated. Not only did I not sleep well, but I had the same symptoms regardless.
And now new symptom has just reared it's ugly head. Heart palpatations are now occurring for the first five minutes when I lay down. Not a pleasant feeling.
Good wishes to all,
Joel
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Have you inclined your whole bed or you did it only with pillows?beechwood297 wrote:Thank you all for your kind words of support.
For the record, I tried sleeping in a recliner, that kept my head elevated. Not only did I not sleep well, but I had the same symptoms regardless.
And now new symptom has just reared it's ugly head. Heart palpatations are now occurring for the first five minutes when I lay down. Not a pleasant feeling.
Good wishes to all,
Joel
You should feel some improvements after 1 month.
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
- cheerleader
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Hey Joel...this has all got to be pretty stressful. Just try a few books under the headboard. It's too hard to sleep sitting upright, and the stress of it will cause further cortisol release and further vasoconstriction and reflux.beechwood297 wrote:Thank you all for your kind words of support.
For the record, I tried sleeping in a recliner, that kept my head elevated. Not only did I not sleep well, but I had the same symptoms regardless.
And now new symptom has just reared it's ugly head. Heart palpatations are now occurring for the first five minutes when I lay down. Not a pleasant feeling.
Good wishes to all,
Joel
The best thing to do is deep, low yogic breathing (when the palpitations start, take a relaxed deep inhale, hold it for 5 counts and release really slowly thru your nose...this helps get the heart's rhythm back and stops cortisol release.)
Have the docs given you any feedback as to "what's next?"
Hang in there-
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