After my consult today, Dr. Ellison said he wants me in surgery ASAP (no more than four weeks, probably sooner). He wrote very thorough notes about my ES, vEDS, symptoms and need for surgery etc. and mentioned that while he has the panoramic xray of my head/neck he still needs the CTA from two weeks ago. Here’s what he said about that:
" |1. Will obtain actual images - though the plane lateral x-ray certainly confirms very, very elongated styloid process - likely thicker than typical, too.|"
This was oddly validating to read. I will update y’all on my surgery date on Monday when I meet with him again after he has a chance to view my scans!
Good that the thickness is noted too; that often seems to get ignored, but in such a cramped space it should be obvious that it could affect nerves & blood vessels!
Yeah, I’m glad he noted that. He was very upfront in telling me that the nerve damage might be permanent or, at the very least, take a long time to improve. So, the dysautonomia (that is likely rooted in my vEDS but triggered into more symptomatic reality by ES) probably won’t improve after surgery (and might get worse depending on what they do to my nerves in surgery), but the real risk of dissection, stroke and so on will be minimal (my vEDS still puts me at constant risk but I won’t have a spike threatening my carotid and jugular anymore). He said my tonsils might have to come out and I really hope not. I am both dreading and ready for surgery.
I’m curious about why he thinks your tonsils might have to come out. If the surgery is transcervical i.e. through your neck, surely your tonsils won’t be in the way. They’re only a potential problem in intraoral surgeries.
Because, while the ES is the main focus of my surgery, since he’s a neck expert and an oral surgeon is consulting they might take care of a few other things. My tonsils have been chronically inflamed for years and he thinks they might cause some of my throat symptoms. Additionally, my bottom wisdom teeth are impacted and might be contributing to the pain. I can’t have a dentist take them out due to my vEDS so I’ll likely be scheduled for two surgeries with this team. We’ll see! He also thinks my C1 might be causing compression issues. I’m not as familiar with that but do know I’ve had pretty severe spinal issues for years. I don’t know what that might mean, but he made sure to include it in my note.
It sounds like he’s being super thorough! I think he’s a “keeper”! I’m so glad you ended up in his care, @slekeille!
Very thorough! Incidentally, I put the jaw pain and earaches I had had for years down to impacted wisdom teeth, but was told different things by 2 dentists so never had them removed- I’ve not had the issues since surgery, I hope the same for you!