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Eagle Syndrome - Online Support Group

4th times a charm

I had styloid surgery on my right side in 1998. The left side was not done due to being too close to carotid. Fast forward to 2018 and had bi-lateral reduction of styloid removed from skull base. They grew back 6 months later. Within a year I am in the same situation except this is the most painful and challenging it has ever been. Living with this pain is no way to live. I went to emergency room a week ago due to pain being so severe. Had another scan done today and am looking for a doctor that has done a great number of the surgeries. I am in Florida but am willing to travel anywhere at this point

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Umiamigirl,

I sent you a PM.

So sorry that you’re going through this again! It is very rare to get re-growth so you’re incredibly unlucky. Given that this has happened, it would be best for you to see someone with experience who can take the SP back as far as possible to the skull base.
Check out the Doctors List; the 2019 one is the latest. If you’re really willing to travel, Dr Samji in Ca is very experienced, & can hopefully take your SPs back further to avoid regrowth. Dr Nuss in Louisiana is nearer, very good but very busy.

Dr. Magnusen in Orlando, Florida did mine robotically. I would recommend him. He works out of Florida Hospital Celebration location.

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Dr. Cognetti, Jefferson Hospital Philadelphia… Did over 100 ES surgeries.

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Dr Cognetti is a great surgeon, & has done many successful surgeries, but I think doesn’t take the styloid completely back to skull base? That’s what we’ve heard anyway, if so, probably not the best option if someone’s had quick regrowth.

Yes, Dr. Cognetti leaves a small nub at the skull base - not a complete removal. That is what he did for my left side external removal.

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I had mine removed back in April 2004 and now I am having neck, upper back and shoulder pain. It slightly feels like something is under my tongue in the back. UGH…this is hard. Life is hard when you cannot feel relief. I hope you can get your doctor to do what needs to be done for your healing.

I have to wait till July 14, 2020 to see Dr. Krempl. He’s booked that far. I saw him last year in January but, I did not have symptoms. I hope I can get through this…

Hi Hadassa,

I’m so sorry you’re having new symptoms. Would your PCP be willing to order a CT scan of your neck from skull base to hyoid bone for you so you at least have some information to give to Dr. Krempl? Is there another ENT you could see before July especially if you get an updated CT? You want to look for a skull-based ENT surgeon (most likely a cancer specialist). Hopefully there is someone besides Dr. Krempl in your area.