@Leah I too have been searching for a lot of this information provided on this forum for about 2 years now. Mostly reading Reddit posts and scientific papers, until one Reddit member said to look on this forum.
Congrats on the twins, I have a 10 month old and a 5 year old myself. I saw the toll it took to have 1 child at a time on my wife, so I can’t imagine having 2 and dealing with ES/VES symptoms.
Really, I based my choice on the fact that everyone on Reddit recommended Dr. Patsalides as the expert on transverse sinus stenosis. Last year I found the my right transverse sinus was barely visible on an MRI, something that had been missed by radiologists on multiple MRIs I had taken over the course of 10+ years.
It took 3 (Nov 2022) months to wait for an online appointment with him to discuss my scans and then another 3 (Feb 2023) to do testing (Venogram/Angiogram and balloon occlusion). During that time I eventually kept going back to my scans and noticed the IJV stenosis on the both sides, but more prevalent on the left, which I knew was the only functional side to begin with. I had already started with Dr. Patsalides and so I proceeded to see what he thought after testing. Dr. Patsalides does not treat IJV stenosis, so he recommended me to his associate Dr. Larry Lo, fellow neurosurgeon who works in the same office.
At this point I had read various papers about IJV stenosis, some recommended C1 shaving others recommended stents. Dr. Lo has experience with all of the above and said that my IJV stenosis was extensive and that in his experience he has a better success rate when shaving the C1. Stent is a last resort if the vein doesn’t open many months later post surgery. Like I have mentioned in the past, it is probably due to the amount C1 is contributing to the stenois vs the styloid.
Dr. Lo is a neurosurgeon and does the C1 shaving portion of the surgery, Dr. Costaninto is a specialized ENT who performs the styloidectomy to the base of the skull. Dr. Costaninto will do the initial incision behind my ear and down towards my throat. He will also be detaching some minor muscles (he assured me I will not miss, fingers crossed) that connect to the hyoid bone to make access to the styloid and C1. I can’t remeber the exact terminology, but he will score the stenosed part of IJV to release it from its crushed form and it should balloon up immediately during surgery.
None of these doctors expressed any real concern about getting this done asap in fear of a stroke or a major blockage. The reason is that you can live without your IJVs, many throat cancer patient have to have them removed. Your body will try to use collateral veins to compensate. In many cases they compensate well and the patient never experiences any major issues and in other cases they can’t compensate enough and experience idiopathic intracranial hypertension (IIH). That’s why Dr. Patsalides tests for with this balloon occlusion testing.
The CT with contrast will reveal a lot for the next steps forward. You should also look at the transverse sinus in that scan as that is another place for a stenosis and will have the same effect as IJV stenosis. It’s common in females with hyper elasticity in their muscles with symptoms of IIH and especially if you can hear your blood pumping in your ears (pulsatile tinnitus).
I have not had surgery yet (May 16) and there are no members that I have found on this forum that have results from the 2 surgeons I am using. While I have complete faith in the direction I am going, I can’t recommend either until after surgery. However you could get the ball rolling and start scheduling the telemed appointments. Dr. Lo took about 1 month to get scheduled with for review of imaging and another 2 months for surgery after that, but that is probably because I was already a patient of the practice.
Dr. Hepworth and Dr. Hackman both have verifiable good results by members on this forum, but neither do the C1 shave as that requires a neurosurgeon. So again, I would look at your imaging to see if clearly shows what is causing the stenosis, styloid or C1 and base which surgeon to proceed with after that. Also insurance can be an issue, so make sure you are covered when setting up your appointments with these doctors.