Hi @Cdbruce -
I’m glad you FINALLY saw a doctor who had a clue.
First off, as much as “getting back” at the doctors who misdiagnosed you would feel good, the time & money it would require to sue each one would probably do you in financially & emotionally so it’s best not to consider that option. I expect there’s a way to file a formal complaint against them w/ the medical board or medical group(s) they’re associated with, but you’d need to call their offices or do some online research to see how to do that. If you want to inform them that you have a legitimate diagnosis, send them each a letter w/ a copy of the formal diagnosis which your current doctor has given you.
Whether your styloid process is still attached to your skull or not, IF it is causing symptoms then you have Eagle Syndrome. The best results from styloidectomy surgery happen when the styloid is cut back as close to the skull base as possible so your doctor is both right & wrong. Because of the very important cranial nerves that exit the skull near where the styloid attaches, most doctors do not do a true skull base removal but leave ~1 cm (sometimes less) of styloid to protect those nerves. It’s nearly a complete removal. In most cases, when the styloid process is “just trimmed down”, symptoms often don’t go away, & if they do, the styloid tends to regrow so another surgery is necessary to cut the styloid off again & hopefully short enough the second time so that regrowth doesn’t occur again. We have members who’ve had broken styloids & have had successful styloidectomies. What you have is not much different than someone whose stylohyoid ligament has calcified but is separate from the styloid process. It’s just calcification slightly lower down than the styloid.
If you get your styloid removed by an EXPERIENCED ES SURGEON i.e. a surgeon who has done many successful styloidectomies, your chances of having a good outcome are excellent. It sounds like your current doctor isn’t very experienced with ES. I would NOT have him do your styloidectomy.
There is a ton of information on our forum about surgical recovery & what to expect. Basically, the first 1-2 weeks after surgery are when you’ll be the most uncomfy, but if you take your pain meds as ordered, ice your neck several times per/day & night, sleep w/your head elevated, & take it easy, it’s not as bad as you might expect.
The amount of scar tissue a body makes is individual. Some people make more & some less. You can help reduce the amount of internal scar tissue that builds up by gently massaging the incision starting about a month after surgery. Usually excess scar tissue isn’t a problem.
Full recovery can take a number of months because nerves are slow to recover, but they do recover. Many of our members have gone back to work after a week or two of recovery, but we recommend starting back part time.
I don’t know where you live, but if you’re able to travel to see one of the doctors on our Doctors List, I expect you wouldn’t be refused surgery. None of these doctors would consider your case to be “too dangerous”. Dr. Cognetti & Dr. Costantino do video initial consults & Dr. Hackman requires them to be in person -
Dr. Cognetti in Philadelphia, PA, Dr. Hackman in Chapel Hill, NC, & Dr. Costantino in White Plains, NY, are three excellent surgeons in the eastern part of the US. There are also good doctors in other areas as well. Here’s the link to our current Doctors List:
https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245/11
Regarding disability, you can apply for Social Security which eventually allows you to receive Medicare coverage as your medical insurance. I know nothing about the application process so you’d need to explore that. Again, I fully believe if you have your styloidectomy done by an experienced ES surgeon, you will not need to give a second thought to going on disability.
There are many very experienced doctors that don’t have a clue about ES & the MANY & CRAZY symptoms it causes. Many of our members have been diagnosed as hypochondriacs, drug seekers, stressed out, etc, & they’ve been sent to psychiatrists. The diagnosing docs are just ignorant & don’t know to look for styloid elongation. It’s not that they didn’t look at your scans it’s that they didn’t know what to look for & instead of trying to figure it out by doing some extra research, they took the easy route & dismissed you. I am so very sorry this happened to you & that you’ve suffered for so long.
Your problem is solvable & with a good surgeon at your side, your recovery from the current symptoms should be pretty complete. One thing I need to add is, do your symptoms indicate you may have vascular compression? There are two forms of ES - vascular & non-vascular. If you have the vascular version i.e. your styloid(s) is/are compressing either your internal jugular vein(s) (IJV) or internal carotid artery(ies), (ICA) then we will recommend specific doctors for that as not many in the US do the necessary decompression surgery especially for the IJV.
I hope all this information is helpful. Please feel free to ask any other questions you have especially about doctors on our list so we can help you make sure to see someone who will make a difference for you.