Hi! Starting a new thread so I don’t keep clogging up “NYC surgeons.” I had my surgery Monday with Dr. Costantino and Dr. Tobias (neurosurgeon) at Stamford Hospital. I’ll paste below what Dr. Costantino wrote to my physiatrist, who originally diagnosed me.
“We expanded the jugular vein substantially even with left lateral head rotation as a result of the removal of the C1 transverse process, styloidectomy, translocation of the spinal accessory nerve, jugular vein fasciotomy, and lysis to the posterior bellies of the digastric. Interestingly, the styloid process did not seem to create any compression of the jugular vein. It was all the transverse process and spinal accessory nerve that compressed the vein between them.”
He took photos (I can share them, but they’re pretty gory) of how the spinal accessory nerve was completely flattening the jugular vein, and showing the “major decompression” once the nerve was moved and transverse process removed. He especially wanted me to get on this forum and impress upon everyone that the styloids, even elongated ones, are not always the issue, and that technically he wouldn’t call my condition Eagle’s.
I did notice an immediate difference on waking—less pressure around my eye and ear especially. I can’t really tell if the constant discomfort around my head and neck is gone since it’s obviously ramped up significantly right now, but I’m very hopeful.
Recovery is by all counts going smoothly, but I have struggled with pain management and discomfort. I think the surgery was more extensive than anticipated (it took four hours instead of the projected two, and the nurses told me they prepped an ICU bed once they saw Dr. C’s notes, though thankfully I didn’t end up needing it). I was able to go home after a day in the hospital (very fancy rooms with beautiful views in Stamford, and really attentive care), but the drive home was rough and I’m still pretty exhausted. Taking it one day at a time!
Thanks for all your support!
