i know this may sound silly but im truly curious. when you went to surgery , were your symptoms somewhat manageable and you went hoping that it was the best decision for improvement or did you went barely making it to even take a flight, eat and in horrific pain and anxiety?? . a) im just worried that my anxiety and pain is not under control and that should somehow be treated to endure such invasive procedure b) ive seen 3 drs from the list only one offered surgery ( and thought it was VES)and the two others didnt think this was related to ES but didnt offer any path c) not completely sure that my calcified ligaments can be causing so many issues and there might be something else going on but dont have feedback from dr that is offering surgery since hes hardto get ahold of . i even have an mri that shows incidental finding of vascular gpn nerve compressed. On top of all i saw another dr who thinks its more of a hyoid issue and gave me steroid injections on upper palate which has mede everything 100x worse . please send good thoughts . gracias
Hi Eli. I just had my first surgery on 11/11, mentally I was in a good spot, physically, just so tired of the all the symptoms and how they minimized my life. I was of course a little nervous, but I put a lot of time to finding a quality Dr and you can find my updates in my profile, overall doing well. The procedure, when done by a quality dr, is really not that invasive to them. There are some common post-op issues, like numbness, but some folks have none and are pretty set after 3-4 weeks.
What Drs did you see? Can you share your imaging? The Dr list is imperfect, the first 4 or so I reached out to were busts. So much good knowledge on this site and experience with ES
Hi @Eli, there was a good post from @DeeCeeNorth today where she discussed her frustration w/ post op symptoms that haven’t subsided & results of a post op scan. She contacted @Kjetil Larsen whose name comes up on this forum somewhat frequently for a second opinion. He’s in medical school in Colombia but has an excellent understanding of ES, HBS & the problems they can cause. It would be very worthwhile for you to send your scans to him & get his opinion as to what he sees could be causing your worst symptoms as that could give you a better idea of what your next step should be. The only contact information I have for him is mskneurology.com which is an organization he started. If I find out a better way to contact him, I’ll let you know.
It’s a difficult decision to have surgery, I understand you’re anxious…I was fairly confident that ES was causing my vascular symptoms (a CT with contrast showed bilateral IJV compression), I was seeing probably the most experienced surgeon in the UK for this, & was very confident in his abilities. I was feeling really quite rough before surgery, not as bad as many on here but I was getting some scary symptoms, so I felt that having surgery was a no brainer.
If you’ve seen a doctor who has experience of VES then that would give me confidence that they’re not encouraging you to have surgery if you don’t need it, especially if your symptoms align with VES. The anxiety could well be from the vagus nerve, and hopefully ES will help. Obviously the compression of the GPN if that’s from a blood vessel might not resolve with surgery, it’s an unknown, but we never know if all our symptoms will go with surgery. Are you able to speak to a Neurologist about this? Presumably a MVD surgery would be the way to go for it, but then given how you’re feeling, would you want to have that surgery at the moment?
I think @Isaiah_40_31 's suggestion of a consultation is a good one, it might give you a more definitive idea of which direction to go in…and might give you the confidence to choose the right surgery?