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I just came back from an office visit with the IR who did a venogram and venoplasty on me this Monday.

The quality of the venogram imaging was state-of-the-art which is not surprising considering where it was done.

The IR showed me image by image the extensive network of collateral veins, and how he attempted to open up the stenosis.

The problem is that my stenosis is way up, inside the skull base, and veins so diminished that he couldn't risk inserting the cat wire any further. Too thin. On the right hand side, the collateral veins totally obscured the IJV, so he couldn't advance the wire.

Stents are out of the question because you need some good vein walls above and below the stenosis, and that didn't exist in my case.

So, my case is hopeless. I will just have to deal with the symptoms.

I asked the doctor for permission to give his name out. He said his department is drawing up a formal procedure (but not a IRB), so requested I hold off until I hear from him.

If hear something from him, I will post it here. The hospital is in the USA, and hasn't been mentioned here before. I intend to honor his request.

Donnchadh

From Dr.Sclafani :"i have been told that if the flow in the jugular veins is obstructed lower down, then flow is diverted to the vertebrals and that leads to collapse of the upper part of the vein. At the level of the carotid bulb, and the high IJ near the skull base.

I didnt realize it when i first got involved with ccsvi but l am a quick learner. I was planning to treat the high ij on the kamikaze based upon a CT venogram but by the time he was scheduled for his procedure, i had learned and didnt treat that area.

I look at the area with intravascular ultrasound (IVUS) and watch it phasically increase and decrease is size, proving it is not real stenosis.

I am not saying that there are no occasions were a stenosis is seen there but i havent had to treat that area. That area is a really crowded one, with nerves and veins and arteries completing for space. i can imagine that stretching the nerve or compressing it by stenting could be a problem so i am very reluctant to stent that area

Donnchadh--
I am so sorry to hear your result. My husband also has a malformed left jugular like yours--the stenosis goes up into the skull. His collateral has reformed. His right jugular stenosis was lower and has remained open, however. I remain hopeful that neuroradiologists will be able to help you both. They are used to dealing with stenting into the dural venous sinus to treat idiopathic intracranial venous hypertension. It is doable.
http://www.medscape.com/viewarticle/714384

Perhaps your doctor could consult with Dr. Dake at Stanford. PM me if you want to discuss further.
cheer

Donn,

Don't give up. This is just the beginning of CCSVI treatment. Maybe in a couple of years they will understand how blood drains from the brain in more depth and more treatment options will be open. You are very brave to have found a doctor willing to treat you. Maybe if Your doctor and Dr Dake consult they will come up with something. And maybe Dr Sclafani too !! Thank you for your story. Everybody counts.

ozarkcanoer

much sympathy to you Donndach--
and gratitude that you will at some point inform of of this new doctor..

as above said, early days yet, new aspects seen every day (ex is Barbara Farrell with the May-Thurner showing up)--and these aspects will be posted here or elsewhere.
So, hoping you'll stiick around--
much light to you...

Thank you for sharing your experience and stay hopeful. I am sure there's going to be a solution soon.
I'll be waiting for good news from you.

definitely get a second opinion. If they concur, then get a third opinion.

My IR has treated numerous cases of "high stenosis" (he's not USA-based though). Please also get in touch with fellow TIMS members: avantitech (Adolfo), and JoyIsMyStength (Pam). Pam has an apparent stenosis at the jugular bulb, and is in Poland right now. She'll be reporting on her treatment by the world experts in a day or two. Adolfo had the highest of high balloon angioplasty treatments I've ever heard of.

Donnchadh,

Don't give up hope. There is still so much to be learned about ccsvi and how to treat. Try to keep your spirtits up, I know it must be hard, but please take care of yourself until an answer can be developed for you.

Sheila