Hi bakari86 ~
I would feel lost, too, if I were you! BUT, I’m here to offer you some hope & help. First off, it’s not uncommon for ES symptoms to continue post surgery for awhile. They can come & go for 6 months to a year after surgery. Second, I just reread your previous posts, & it sounds like you may have bilateral ES (based on what you said). If that is correct, the remaining styloid process often will start or continue causing symptoms after the first side is removed. Often those symptoms are very strong & thus require a second surgery to remove the remaining styloid process (or calcified stylohyoid ligament) in order for the symptoms to fully go away (still remembering that it could take 6+ months after the second surgery for everything to settle down). ES pain is caused by nerve irritation & inflammation. Inflammation takes time to go away & nerves can be very slow to heal. The fact you have had a few episodes of returning symptoms is not surprising as nerve regeneration can be painful.
I am rather appalled that the PA & surgeon’s assistant have taken it upon themselves to tell you that you were misdiagnosed. I’d like you to hear that from the surgeon’s mouth. It is my opinion (I’m not a doctor) that you are still in the midst of healing & that IF you do have bilateral ES your remaining styloid/ligament may be contributing to your bouts of pain/symptoms. You could further pursue the idea of “mis-diagnosis” by sending your diagnosing CT scan to one of the very experienced ES doctors on this forum (Samji - San Jose, CA,; Cognetti or Newman - Philadelphia, PA; or Milligan Phoenix, AZ; Nuss - Baton Rouge, LA) & request a phone consult for a second opinion. You will have to pay for the phone consult, but at least you’ll have the opinion of a doctor who knows ES well. You can proceed from that basis in deciding whether or not to pursue a second surgery which, assuming you do have ES, will most likely help alleviate your remaining pain.
Based on the mistakes made over the course of your first surgery (lack of glue, premature release from medical care, poor post op instructions), I would not return to the same surgeon to have a second surgery done. Not only that, if he wasn’t forthright enough to give you his own opinion regarding misdiagnosis (instead of sending his PA/med assistant to do it), I would leave his practice w/o any regrets & find a different ES surgeon.
As you can tell, I have strong opinions about these things. ES surgery is not something to be taken lightly, as you know, so you deserve the best possible care when choosing to go through with it.
Here is the link to the US Doctors’ List in case you choose to look up any of the names I’ve suggested. US Doctors Familiar With ES, 2019
Please let us know how else we can help encourage you! We ARE here for you!
I’m sending a gentle cyber hug.