Eagles has been know to cause Trigeminal Neuralgia. If that's what causing yours, you could get some relief from getting the styloid removed.
Heidemt, thanks for the info. I wonder if it is contributing to mine? I present with different symptoms burning sensation on my head and face-mainly on my head ears and it is on both sides.
heidemt said:
Eagles has been know to cause Trigeminal Neuralgia. If that's what causing yours, you could get some relief from getting the styloid removed.
Heidemt, thanks for the info. I wonder if it is contributing to mine? I present with different symptoms burning sensation on my head and face-mainly on my head ears and it is on both sides.
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I think it's very possible that the TN could be from the styloid(s). The only way to know for sure is to get the styloid(s) taken out. Can you go to one of the doctors that has experience with Eagles?
I am trying to find a Dr. more familiar with it than the one I have right now. I am sure someone at Duke would have the knowledge to know if these correlate or by having the one that bothers me would exaerbate the situation.
heidemt said:
Heidemt, thanks for the info. I wonder if it is contributing to mine? I present with different symptoms burning sensation on my head and face-mainly on my head ears and it is on both sides.
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I think it's very possible that the TN could be from the styloid(s). The only way to know for sure is to get the styloid(s) taken out. Can you go to one of the doctors that has experience with Eagles?
That's always the hardest part it seems - finding a doctor who really knows about this. It's kind of funny how some of the best institutions in the country don't always have doctors who are really knowledgeable about Eagles - like the Mayo Clinic and the Cleveland Clinic. I hope you find someone. I saw that you were emailing with Krista. I hope maybe her doctor can help you.
Yes, I do too. I reached out to her because of her post hopefully I can contact that doctor also and see what input they would have on the situation. You are so right...it seems crazy to me. I would think big institutions would certainly have the knowledge base with as many people that they encounter....go figure..smh!!
heidemt said:
That's always the hardest part it seems - finding a doctor who really knows about this. It's kind of funny how some of the best institutions in the country don't always have doctors who are really knowledgeable about Eagles - like the Mayo Clinic and the Cleveland Clinic. I hope you find someone. I saw that you were emailing with Krista. I hope maybe her doctor can help you.
Heidment, I don't know of any really. I think he does not want to make my other symptoms with TN worse. I am going to try to get some more input on my next visit. He has done one. He is a head and neck cancer surgeon. I was suppose to see a neurosurgeon to get his input but they have not call me yet. When I think about having my tonsil removed and this...it just seems so unimaginable. I don't have really any symptom with the exception of felling like there is something in my throat. I can push on it and it does to produce any other symptom. I can not sleep this is new to me...not b/c of discomfort I just keep waking up. I take something to sleep but it does not do the trick.
heidemt said:
Heidemt, thanks for the info. I wonder if it is contributing to mine? I present with different symptoms burning sensation on my head and face-mainly on my head ears and it is on both sides.
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I think it's very possible that the TN could be from the styloid(s). The only way to know for sure is to get the styloid(s) taken out. Can you go to one of the doctors that has experience with Eagles?
That's great to hear Heather B. Yes, I'm having symptoms on the other side. I went Wednesday for my surgery and was told my surgery was canceled. I never got a call saying it was canceled. No one knows how or why it was canceled but I say everything happens for a reason. God knows! The doctor called me three different times rescheduling my surgery. After speaking to him further I don't feel that he is very knowledgeable or should I say experienced in this type of surgery so needless to say I canceled the surgery myself this time. I will make some calls to see what can be done so I can come back to Atlanta to have Dr Del Gaudio perform the second surgery as well. Praying all goes well with your biopsy.
Heather B said:
Shoppergirl, my tonsils were removed when I was 13, therefore I can't really advise on that. I do know normally if you have ES and still have your tonsils they will remove it/them in the process before removing the styloid.
The process of surgery depends on the location and length of your styloids and whom your surgeon is. Is your Dr knowledgeable about ES and have they done many of the surgeries or are they referring you to someone else?
Sweet C, thank you! I have quit and feel so much better! Good luck on your next surgery! I hope this surgeon is as skilled as Dr. DelGaudio. Will this one be external as well? Were you having symptoms and decided to go for it? I have the same length on my other side that will need to be removed one day but I guess I just wait for symptoms to know when to have the other side done? For now I am still healing (fast too!) & have a cancer biopsy set for the week after Christmas on the nodule they found on my thyroid. I have been very pleased with Emory and am happy to travel to get the right care!
Good to know - you are so right! Everything does happen for a reason and it sounds like fate didn’t want that surgeon operating on you! Whew! Glad you are going to get Dr. DelGaudio to do it! ! Thank you - I am sure my biopsy will be fine. I will update once I know more and you do the same!
I think Dr Scharf at Cleveland Clinic OH, may have some experience with Eagles. He is skull base and I have met him personally. He is nice and I asked him about Eagles because it says Eagles on his bio. I think he is patient oriented, but I really don't know a much about his experience with Eagles. I do know that he is patient oriented enough to participate in a free seminar for thyroid cancer patients, and give 4 hours of his weekend to do so. I met him there. I had thyroid cancer, but the topic. perhaps Cleveland Clinic, OH has one Eagles doctor. You are right though, it does not appear that Mayo and Johns Hopkins have much interest in Ealgles. Try Thomas Jefferson Hospital in Philadelphia, those of you who are close.