A few pics from my scan by Dr. Haacke

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

A few pics from my scan by Dr. Haacke

Postby beechwood297 » Sat Nov 14, 2009 3:41 pm

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.

Image

Image

Image
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Postby ozarkcanoer » Sat Nov 14, 2009 3:47 pm

WOW !!!!!! beechwood... I am so excited to see these images. Now I hope you can get some help. You have made me even more excited about my trip to Detroit. I'll see Dr.Haacke on December 7 !!!!! Thank you for posting these pictures !!!!!!!!!!!!
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Postby LR1234 » Sat Nov 14, 2009 3:47 pm

Hey Joel,
Thanks for posting.
So what are your symptoms again? and how old are you?
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Postby bibliotekaren » Sat Nov 14, 2009 4:04 pm

Amazing pics -- it looks like there's no flow in the transverse or sigmoid sinus on the one side. But I guess if there's no where for it to go...

Thanks for sharing these.

Donna
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Postby CureIous » Sat Nov 14, 2009 4:42 pm

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.
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
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Postby beechwood297 » Sat Nov 14, 2009 5:17 pm

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
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Postby ozarkcanoer » Sat Nov 14, 2009 5:21 pm

Oh !!!! I'm so sorry beechwood... ((((beechwood)))). I hope with all my heart that something good comes out of this for you !!!!!!!!!
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Postby Sharon » Sat Nov 14, 2009 5:29 pm

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
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Postby Arcee » Sat Nov 14, 2009 7:51 pm

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
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Postby ErikaSlovakia » Sun Nov 15, 2009 2:30 am

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

Oh Joel, your situation is really difficuilt. I am sending you some energy.
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!!! 8O
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 beechwood297 » Tue Nov 17, 2009 10:12 am

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
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Postby ErikaSlovakia » Tue Nov 17, 2009 10:15 am

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

Have you inclined your whole bed or you did it only with pillows?
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
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Postby cheerleader » Tue Nov 17, 2009 10:30 am

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


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.

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
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