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Eagle Syndrome - Online Support Group

Misdiagnosis?

So after having external surgery on my left side to remove my styloid process at the end of April, I had 5 episodes of he pain was experiencing before the surgery. Of the 6, 3 were full blown painful and 3 were nowhere near as painful as it was prior to the surgery.

Now, a PA and the surgeons assistant are telling me that I was misdiagnosed, that it was not Eagle Syndrome, and that the only thing they can do is refer me to an Oral specialist and a neurologist.

I’m so lost right now.

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.

:hugs:

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Thank you so much. Truly! You have actually addressed some of the confusion I had.

Firstly, you are correct, my diagnosis was originally bilateral ES. The surgeon even told me that I may have to have the other side operated on, but we’d wait 9-12 months before deciding, based on my recovery. I mentioned this to the PA and she nodded but did not bring it up after she brought in the surgeons assistant to deliver “the bad news”.

His assistant has seemed skeptical of my diagnosis from the first time I met him. This left me wary of their practice early on, as the surgeon was confident in his diagnosis in the same appointment where his assistant was discussing more scans to confirm. It was bizarre and they clearly weren’t on the same page. The surgeon himself is always off at conferences around the world, but I think I should at least consult him directly about the entire situation.

That being said, I will take your advice and consult with another ES specialist regarding the diagnosis. I have all my testing results/scans available to me in an online portal that I can readily share.

I also thought it bizarre that the PA and the surgeons assistant did not consult with the chief surgeon before telling me I was misdiagnosed. I mean if they did, it would’ve had to have been a 5 minute phone call while I was waiting on the PA to return to the room. I actually now suspect the surgeon’s assistant doesn’t believe in Eagle Syndrome because he has tried to dissuade me from believing the diagnosis ever since I met him. Their office deals with more common face and neck injuries and I think he might be a skeptic. This is also considering that 8 ENT’s from another hospital group agreed with the diagnosis. They only sent me to this surgeon because no one in their group had ever performed a styloidechtomy.

I’m comforted to also know that it may just be a matter of time to allow things to heal. That would make more sense considering, in terms of pain levels, I have definitely noticed that, of the post-op “episodes” I’ve had, the pain as a whole was almost non-existent (3 out of 6). So this makes me feel like I am on the right track. Just the wrong doctor/facility.

You have no idea how much comfort and peace you have brought to my mind, body and spirit. I spent last week being distraught and angry and this week anxious and stressed after being told I was misdiagnosed. But you have given me a new avenue to pursue. Thank you so much for all that you do. This forum has been much more helpful to me (especially post-op recovery) than most of the hospitals staff were. So thank you, thank you, thank you!

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Thank you for your follow-up post, bakari86. It makes me feel happy to know I was able to help you.

I feel sad & sometimes angry that medical professionals can be so insensitive, heartless even, when dealing w/ things they don’t understand or about which they aren’t educated. I find it ludicrous that a very talented surgeon would have a PA/med assistant who aren’t on the same page as he is. It’s their responsibility to support his decisions, diagnoses, etc., not form their own. I believe your surgeon does need to know that his support staff isn’t supporting him so good for you for following up w/ him as you are able.

I am glad to hear that you feel better overall even if you’re not fully “cured”. That in itself can be testimony to the fact you made the right decision to have surgery & your surgeon made the right diagnosis & did the proper surgery to help you.

Please stay in touch & do let us know what you find out from your second opinion consult as well as what your surgeon says about the “little talk” his PA & med assistant had w/ you.

I agree with Isaiah, it is still early days for your healing, so hang in there! Do you know how much of the styloid was removed? & I do agree that it is difficult to tell success of surgery if you have bilateral ES & only 1 side done. Let us know how you get on!

Hi Jules!

Well the surgeons assistant said “there was nothing left to remove or operate on” but I’m pretty sure the surgeon mentioned taking out about half of the styloid process. It wasn’t in any of my discharge or post- op paperwork unfortunately. So I don’t know for certain.

Perhaps you can request the surgical notes so you have complete information for your phone consult?

BTW - My surgery was 1/7 and it took me at least 4 months to feel better (not whole) and at 5 months the other side started really letting me know it must go. Have faith - you are very early in the healing process.

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This is another wonderful suggestion! I would’ve never thought to obtain the surgeons notes. I will do that and I hope to hear from the Mayo Clinic here soon for a second opinion. They have a doctor recommended by this forum who has experience with ES so I’d like to get his take on the situation.

Thanks again for all the help and suggestions!

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Hi bakari86 ~

Here is a link to the one post I could find about Dr. Young -


It’s a good recommendation, however, it does sound like he does intraoral surgery (my tipoff was that a tonsillectomy was involved. Sometimes that’s required w/ intraoral surgery). Some doctors offer a choice - intraoral or external. He may be one of those so it’s worth it to talk to him.

I am having surgery at Mayo Scottsdale this month. Which a Mayo are you trying to get in?

There is a Mayo Clinic here in Jacksonville. That’s where I requested my appointment for.

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