well I had (IJV) compression surgery about 1 month ago. It was a revision from styloidectomy in 2020. I had a c1 shave on one side among a few other things on left.
My daughter has just got a DX of the same but some different issues a part of her case. She has POTS/Dysautonomia, MCAS, SFN. We have hEDS. I have nTOS, her, maybe. She CCI?
I recently (DEC) had a consult w EDS specialist and advised to get check for vascular compression. I have been having severe left flank pain that seemed to wrap around and up to my mid back and kidney. I saw vascular surgeon who did US and said I likely have May-Thurner and possible Nutcracker. I saw a thoracic surgeon for consult for Slipping rib and told I had MALS anatomy.
My daughter does not have May-thurner but US and past CT I reviewed indicates Nutcracker. We just got the IJV DX a couple weeks ago. I have to say it is a bit overwhelming trying to sort this out between her and I.
I know @BuckeyePrincess took her daughter to Germany for vascular compression I think for MALS/SMAS? She spoke highly of those docs. I and my daughter will probably get an catheter angiogram with IVUS (intra-vascular US). This is supposed to be the gold standard for these compressions.
I have hired a vascular surgeon to review my entire medical records, scans, etc. He no longer does surgery but you can hire him as a consultant (cash pay). https://avcsconsultation.com
I just had a 4.5 hour zoom call with him last week to try and help me sort it all out and it has been worth the consult fee (he takes payments). We are not done either. He has suggested my daughter get a full spine MRI from neck to tail bone to check for other abnormalities.
You are not going to the right docs, yet. Your in the right place to learn. Hope that helps. Feel free to private message me too.