This Is MS Multiple Sclerosis Community: Knowledge & Support

Just a quick note to update what has been going on since I saw Dr. Haake. I had an appointment with a neurosurgeon, and he immediately took interest in my vascular abnormalities. He was almost excited, because he said he had just attended a seminar on vascular outflow problems (I am paraphrasing). He sent me for an cerebral angiogram (which was NO fun!) to get better pictures of the vascular system and my missing jugular, as well as the "pinched" jugular. No word yet from the test. He also is sending me to a neuro-opthomologist who also attended the seminar. I guess there is a new cutting edge technology using lasers in the eyes to test venous outflow problems. So hopefully, soon, I will have more info on the situation, and I will be sure to come back here to share what I learn.

Joel

Image 1 shows no left transeverse sinus or jugular (on mri, left is right and right is left) Image 2 shows where there is a bone pinching jugular (top circle) and bottom circle shows a general narrowing

beechwood, I am so glad to see you post your latest information !! I hope that all these doctors that you are seeing will discover something to help you. Your MRIs are astounding.

ozarkcanoer

Those pics are stunning.

Do you have any information on the new laser technology to measure venous outflow? My neuro is a neuro-opthalmologist, he might be interested in going in that direction.

Hi,

Thank you very, very much for posting these images. I'm still blown away by your case. Showing your scans to my family helped me more easily explain CCSVI to them -- a picture, or I should say a scan, really is worth a thousand words.

Thank you for allowing your scans to be posted on Dr. Haacke's website -- they sure do give strong pause to those who might think MS causes CCSVI... I don't see how MS could cause such a vertebral extension that pinches your jugular; rather, I think the vertebral extension as perhaps being caused by genetic mutation, for instance.

I'm so happy that you're moving closer to finding out what's wrong -- other than obviously having a pinched jugular with the other one missing entirely. I hope you're doing well as you wind your way through all sorts of tests and doctor appointments.

So very sorry to hear the cerebral angiogram was "NO fun!" Thank you for having that test done and for sharing the images -- you're helping so many people, and for that you should be applauded <CLAPPING!!>.

Best of luck, beechwood, and I look forward to more of your updates.

~HappyPoet

I wish you my best. Thank you for updating.
Every step you take in the right direction means a whole lot to everybody.

DICOM explained:

http://www.sph.sc.edu/comd/rorden/dicom.html

Beechwood,
I think it is urgent that you view a video on the atlas and its misalignment--a good one is this http://www.youtube.com/watch?v=2Ae5CHyS ... re=related
I think that the bone that is hitting your jugular is the atlas --
mine has been misaligned for many, many years--drs did not pick it up when I had accident that affected neck and head, and chiros did not pick it up. So for years, in pain, sometimes severe, affecting head, neck, back--and along the way, optic neutitis, then finally MS diagnosis--only recently, due to bad dental work, went to neuromuscular dentist, and he picked up it was the atlas and CI misalignment that was causing some of my severe symptoms. Was with a chiro, but not getting results once again, so switched (rather than give up as had before), and this chiro finally did an adjustment (not her first try, was seeing her for a number of times) that re-aligned my Atlas--am practically pain free for first time in over 26 years--and my left leg which has been out for all these years is very different immediately. Definitely re-aligned my spine in getting the Atlas corrected. I don't usually hold the adjustments--but this has been for 1 1/2 months so far-- My theory--couldn't hold the adjustments before, because the Atlas is indeed the king--get that aligned, and rest of spine aligns.
Atlas can be treated by regular chiro manipulations, (might take a number of tries before gets it), or by the (expensive) orthoganal atlas machines, which are precise apparently and right on.
I hope this is of help to you, and wish you well.

Thanks for keeping us posted...

This is so facinating, so what have you learned?

Lora

Beechwood, I'm so glad you have returned with some interesting news ! Your case was very interesting from the beginning and I am glad to see you are getting some attention from your doctors. I hope they figure out something to help you soon.

ozarkcanoer

The OP is from January, I don't think beech has returned.