Hello! (Please correct me if this is in the wrong category) I’m the weirdo that wrote to 3D Slicer tutorial (full of spelling errors, i’m sorry) I had the surgery and came out the other side better.
If anyone is recently post-surgery and doubts how their recovery is going, if you’re pre-surgery and not sure if you want to do it, PLEASE ask me anything. Does your shoulder hurt? Has your voice changed? Is your posture different? I’ve been there, did the thing, and the wonderful people running this board held my hand and walked me through it.
Before surgery, it honestly felt like I was dying. I laid in bed trying not to move my neck or breathe too hard. I spoke in a raspy whisper. Swallowing food or liquids felt like choking on a sea urchin. Friends I made during that time are astonished and terrified by how much noise I make now that I feel better.
I was diagnosed with an atypical calcification of my stylohyoid ligament (my bone spur grew from the hyoid Up, rather than the still super-rare-zebra-problem-but-more-often-seen calcification from the skull Down) in 2015. After a 1st rib resection to correct nerve issues and circulatory abnormalities in my right arm, as well as near constant gagging if I turned my head to the right… I did something Wild and turned my head to the right. I passed out, and was incoherent for hours. I went to the ER where I had a CT scan to check if I suffered a stroke or a had blood clot in my brain. This was a lucky night in the ER. A student, who had recently studied abnormal topics like Eagle Syndrome, reviewed my CT scan and diagnosed the problem. After some typical shenanigans with finding treatment I wound up with Dr Cognetti in Philadelphia, PA. I had an external, right-sided, stylohyoidectomy in early 2016.
The surgery was quick and simple.The recovery has been long and hard. All-in-all, it was a life changing procedure.
It has been said over and over on these threads that it’s hard to find success stories or post-surgical support because “people who get better don’t come back”. That’s absolutely true. Once the surgery helped me, I dropped off the face of the planet. I used my new found time to pursue my primary orthopedic issue with my arm. If it wasn’t for the email updates, this awesome support board would have been left in the dust of my quest to progress. I hope I can give back some of the support received.
It’s been 3 years now, and I am back! Also, only just Finally feeling like I’ve reached full recovery from Eagle Syndrome.
Please ask any of your weird detail questions and I’ll help the best I can.
- I can look at your xray/CT/MRI and give my opinion, but I cannot give a diagnosis. I’m a nerd, not a doctor.
- I don’t know how much it costs.
- I can help connect the abstract and associated symptoms, but I’m still just a nerd and not a doctor.
- PM me for 3D Slicer issues. I will accept your DICOM via email. Don’t post personal identifying info on the board.)