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Eagle Syndrome - Online Support Group

Revision surgery

#1

It looks like my first set of surgeries did not do the trick. Both of my SP have grown back. My right side was taken down to the skull and it has grown and my Left side was the last side I had done that is causing me the post pain right now has grown alot. I haven’t been told what the length is because the radiologist messed up and didn’t do the measurements like they were told to. However, during the first surgery I was told the Dr was unable to get all of the SP due to the location of the muscle and nerves around it. BUT now, Im in so pain and having migraines or headaches everyday again, ear pain, sore throat, feeling like im being chocked, i feel like there is a mass in there and it is preventing me from completely turning my neck all the way to the left side-makig driving a bit of a challenge lately, sensitive to the sunlight, back of the head tenderness/pain, neck pain etc.
Im worried about having to find another surgeon who will actually be willing to do a revision surgery to remove my SP. Im terrified since both of my SP have grown so much in 3 years from when I had the surgeries, is this what my life going to entail every 3-5 years, surgery after surgery?! Is there a drug out there where they can slow the growth of the SP so I don’t have to keep going throgh so many surgeries?
Im sorry this is so long, I have so many questions now and not enough answers at the moment and its driving me a little crazy at the moment. Im glad that we can come on this forum and vent, rant, ask questions, and feel like we aren’t alone, because I know we aren’t. I had a to take a day for me yesterday and just cry it out. I never thought Id be dealing with this, or atleast, dealing with it this soon after my first set of surgeries. But GOD does have a plan, so I am giving this up to him and going to see where he is going to take me with the journey yet again. Thank you for reading this all the way to the end. Hoping to make new friends on this never ending journey of mine :slight_smile: Have a great day all!!

#2

Hi kcannady,

I’m so sorry for this unfortunate turn of events you’ve experienced. As far as I know, the people who’ve had regrowth who have had revision surgeries have not had a second round of regrowth. It seems their second surgeries have “worked” to end the cycle of regrowth. Hopefully this will be your experience as well.

Though I’m not a doctor, I wonder if the situation around your left styloid that prevented it from being cut back to the skull base originally, might have changed so that in a revision surgery the full styloid can be removed to the skull base. Heidemt had to have a revision surgery that no one was willing to do. She searched until she found a doctor willing to do it. I’ve forgotten who did it but someone back East, I think. She hasn’t posted on here for awhile, but you could try sending her a private message to ask who it was.

You know we’re here for you every step of the way. So glad you posted your current situation & so sad you needed to come back for this reason.

:heart:

#3

Really sorry that you’ve got regrowth…so disappointing after undergoing surgery. I really feel for you…
I guess because the reasons that styloids grow too long aren’t always clear, there’s no knowing who will have regrowth after surgery & who won’t. Some members have had problems with calcification elsewhere, bone spurs etc., maybe then you could wonder if that would make them prone to regrowth, but I don’t know if any have had it happen. Also one of the causes for ES is tonsillectomy, the thought is that the surgery causes inflammation, so maybe if someone’s prone to inflammatory reactions then maybe the ES surgery could cause that reaction! (That’s just me thinking, no evidence for that, but it’s always struck me as a bit ironic, having surgery to correct something that’s happened as a result of surgery…!)
As Isaiah says, we don’t know of anyone who’s had it happen twice, but then maybe that could be a time thing. I’m sorry that we don’t have answers for you about whether it might happen again, it’s frustrating and worrying for you. Will you go back to your original surgeon?
Big hugs for you…

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