25yr old female from MD experiencing severe ear fullness, neck pain, sore throat, palatal myoclonus, persistent headache, dizziness. Elongated styloid was found on a cone beam scan by a TMJ specialist. TMD and infection was ruled out. I had PE tubes put in due to ENT believing it was patulous Eustachian tube that was causing my symptoms. Symptoms have only worsened since then and I have been referred to Cognetti with suspected Eagles Syndrome. I am currently on a leave of absence from work due to my symptoms being so debilitating. Suffering physically and emotionally. What can I do to make the pain subside at least temporarily?
So sorry that you’re suffering & have had to take time off work…
There are a few things which might help- some members have found steroid/ lidocaine injections into the styloid region have helped; I don’t know if your ENT would be able to do this, or if there’s be a wait for that too. The injections are often done under ultrasound to guide them.
Some members have found that icing the area helps, although this made it worse for me, I used heat packs which helped me. Sleeping semi-upright helps sometimes too. And capsaicin cream has been mentioned to help.
As for medication, nerve pain medications can help, like Gabapentin, Amitriptyline, Carbamazipine. Also muscle relaxants help some people, like Baclofen. There’s more info in the Newbies Guide Section:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope that you find something to help…
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jennymak,
Dr. Cognetti books fairly far out for his ES patients. You may be able to get a diagnosis sooner from Dr. DeLacure in NYC or Dr. Hackman in NC. Dr. Annino in Boston is also well respected. If you got your diagnosis ahead of time then your appt w/ Dr. Cognetti could be as a second opinion & you can choose who you want to do your surgery if you do have ES.
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Thank you so much! I will definitely try several of these and ask my ENT on Tuesday if she can do the injections.
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That is really good advice. Thank you so much for your suggestions. I will call the NYC doctor first thing tomorrow morning. Cognetti required that I mail out all of my scans and doctors notes to review and then they would call me to schedule. I have everything except for my cone beam scan which will arrive in the mail on Thursday. It’s a lengthy process.
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So sorry you are suffering so much. This is very hard to read because I remember how long I suffered with the constant poking and feeling so horrible. I don’t know what can be done while you wait to see Dr. Cognetti??? At least you are on the right track and walking out your healing.
Be encouraged that you are on the right track. Once you get diagnosed with ES then, that is half the battle. It’s getting diagnosed that is the problem. It took 17 yrs. for me to be diagnosed and also moving to a different state but, I pursued my healing. Pray that in due time, all of this will go away.
Dr. Krempl in Oklahoma told me that THIS is never coming back…I still see him once a year to make sure everything is okay with me…
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Thank you so much and I’m so sorry you dealt with that for such a long time. I’m so happy that you found help and that it’s gone now. I was able to make an appointment sooner in NYC without having to mail all my scans that I’m still waiting for from the records department. It’s gives me so much hope. I’m willing to travel to get this fixed ASAP. I can’t wait to have my life back!
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I’m so glad you were able to get an appointment sooner elsewhere. Dr. Delacure has a good reputation. I hope he’s able to help you with a diagnosis & the next steps you need to take.
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I hope you can be encouraged by those of us who are now living a better life, One day at a time kiddo…
Take care and let me know when you see Dr.Cognetti.
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