Since many of you in the U.S. are probably extremely saddened by Dr. Dake no longer doing interventions on MS patients outside a clinical trial, I want to share a tip that might lead to some of you getting Zamboni's Liberation Procedure performed locally.
By sheer luck, I found a local interventional neuroradiologist who had performed balloon angioplasty on an MS patient years ago. That patient had something wrong in the veins in his head (I don't remember the details), and the neuroradiologist performed a balloon angioplasty on that vein in his head. Well, to get to the vein in the head, the neuroradiologist had to go through one of the internal jugular veins. And when he did, he found a stenosis in the internal jugular vein, so he performed a balloon angioplasty on the stenosed internal jugular vein. Unfortunately, that patient was really sick, and the interventional neuroradiologist didn't make any connection between the stenosis in the patient's internal jugular vein and the patient's MS.
Then recently, I shared some of Zamboni's papers with the interventional neuroradiologist and he agreed to perform an MRV, venography and balloon angioplasty (if the diagnostics called for it) on my internal jugular veins (as a neuroradiologist, he didn't feel comfortable poking around in my azygous veins). Unfortunately for me, he didn't find any stenosis in my internal jugular veins when he did an MRV. I hope that either he did the MRV wrong or that I have stenosis in my azygous, so that I can get the Liberation Procedure in the future.
The hopeful part for many of you is that it seems that interventional neuroradiologists might be open to performing venography and balloon angioplasty on the internal jugulars if you can get an MRV to show stenosis in the internal jugulars.
If Dr. Dake is still performing MRVs, you could have him do an MRV on you and then call around to interventional neuroradiologists. Alternatively, you could try to have your local neuroradiology or regular radiology department use Dr. Haacke's imaging protocol (I couldn't get my neuroradiologist to use Dr. Haacke's protocol).
The key point is that interventional neuroradiologists go through the internal jugular veins every single day in their practice to get to the blood vessels in the head, so some of you must have local interventional neuroradiologists who have found (and maybe treated) internal jugular stenosis in MS patients who also had venous or arterial problems in their head. If you give those interventional neuroradiologists Zamboni's papers and an MRV showing stenosis in your internal jugulars, there's a good chance they'll agree to perform a balloon angioplasty.
For those of you who don't know, there are many different kinds of interventional radiologists. My understanding is that only neuroradiologists and cardio-thoracic radiologists (which is what Dr. Dake is) perform angioplasty procedures on the internal jugular veins.
When contacting interventional neuroradiologists, I'd recommend NOT asking for stents, since it seems that most medical professionals are extremely wary of using stents in the jugulars. Even though the interventional neuroradiologist I went to sometimes uses stents when he does procedures in the brain, he told me he would only perform balloon angioplasty in the internal jugular veins because he thought that it was too dangerous to use stents in the internal jugular veins.
Unfortunately I've soured my interventional neuroradiologist on MS patients and he doesn't want to be contacted by more MS patients.
I'm about to head off to the airport for a long and well-deserved holiday, and I probably won't get a chance to poke my head around TIMS for a few weeks.
Good luck everyone in finding an interventional neuroradiologist and getting your stenoses treated!