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I went to my IR on Wednesday for the post-op. We went over the results and findings. The venograms truly are the "gold standard" for diagnostic imaging; all the veins were clearly identified.

The IR showed me exactly where the stenosis was; right at the very top where the internal jugular veins join into another set of veins. He discussed stents and told me that he consulted another IR who has already done stents in this location. Would probably use an expanding type of stent.

The problem is that he now has to get approval for the liberation procedure. He has already submitted a proposal to the review board, but it will probably take 2 or 3 months for a decision.

In the meantime, they will not be doing any more ultrasound or MRV tests.

To say this disappointing is an understatement. I will still have to hope the IR gets the green light to go ahead. He is very interested in treating MS patients, and his work was outstanding.

As soon as I hear anything, I will post it.

Donnchadh

My heart and thoughts are with you

Oh, how disappointing Donnchadh... I hope something else will come around sooner than 2-3 month!

Do you have an option of going to another specialist?

Donn,

It's the IRB that is holding up the testing program at BNAC !! And that's not even for any treatment !! You did a wonderful job finding a doctor and I wish for all the best for you. Keep us posted.

ozarkcanoer

I'm waiting on Dr. Sclafani, who is waiting on an IRB also...it feels just out of reach!! Fingers crossed that your doctor gets the go-ahead.

Does anyone know of a DR. in Northern Illinois who will perform ccsvi treatment?

Dr. Hector Ferral at Evanston Hospital does good work. He uses IVUS imaging.

Donnchadh