I am interested in any doctor's in the South that come highly recommended and preferably will look at my scans via mail and email. My doctor's said my Styloid isn't elongated. I just need a good doctor to figure out what in the world is wrong with me. This is my history and any input would be appreciated.
* sore throat
* tongue pain in base of tongue and burning (worse pain of all)
* Ice pick and regular earache
* Back molar pain
I have had CT, MRI, tonsillectomy(biopsy) and most recently lingual tonsillectomy and hyoid bone tip removal
Does anyone suffer 24/7 from this kind of pain, especially tongue pain.
Badeagle had his second surgery with Dr. Alemar at Cleveland Clinic, Weston, Fl very close to Miami. I went to him for a second consult after my surgery. He is supposed to be good. I liked him, but don't really know how good he is or if he would look at your reports. He supposedly did about 30 surgeries, but no way to verify and no one else on this site has had surgery with him. Badeagle was injured and that caused his pain. He still has one pain left a bad pain like a baseball bat hitting him, but said that Dr. Alemar got rid of most of his Eagles pain.
Also, wasn't your surgery recent? Has any of your pain subsided. How long has it been? I had lots of pain for
11 weeks.
My doctor has only done 2 intra oral surgeries(mine was number 2) and I would say mine is successful, but I still have neck pain and some ear pain as well as shoulder pain. It could be a shoulder or cervical disk issue because I have some disk degeneration.
Otherwise, I am feeling pretty good. My doctor had Eagles himself so he was quick to diagnose. He is in Cape Coral, Fl. That is on the Southwest end of Florida on the coast across the river from Ft. Myers, Fl. He will not to external, and I do not know if he would look at your records. He is not with a university or anything. His name is Howard Barrow, I think I listed him on the spreadsheet that I am attaching. Other than those two, no one on this site has listed any successful doctors that I know of. Maybe someone will post since you brought it up.
Check out the spreadsheet attached if you have Excell. If not I will type it in for you. Good luck and I hope your inquiry brings in some new names.
It seems if you want a more definitive answer, you should make sure that your CT Scan is specifically done to look at the styloids and measure them and send the scans to Dr. Cognetti or Dr. Samji. One or both of them will be more likely to help the way you would like. Even if you choose not to go to them for surgery, you would have an answer.
I also think there is a good doctor in Indianapolis, listed on my spreadsheet, he might be a choice if you live in the Northern part of Alabama.
Yes I do suffer the same symptoms as you and I did have eagle's syndrome. I had a right styloidectomy on July 25, 2013 but those pains you describe still persist with me on my right side of my face. Please check out information on Geniculate Neuralgia which seems to fit the pain symptom pattern you are describing. I am just throwing that information out there to you as a possible cause for your afflication. But please check out Emma's list of doctors. She has been kind enough to gather a useful list of medical professionals that you can check out. Eagle's can also cause those symptoms, so it is really important to have the proper scans looked at by someone who is familiar with the condition. If you can find a neurologists/ent/head and neck doctor, that would be your best to cover all areas. Geniculate Neuralgia is also a rare condition but so is Eagle's Syndrome. Whoever you finally see, please question them about both conditions and the possibility of having one or the other. Don't let them discourage by saying "It's so rare." A lot of us on this site have won the lottery of "rare conditions" by actually having it. Good luck on whatever medical decision you make in the future and always be your own medical advocate and don't ever be afraid of asking the hard questions. Just get the complete answers and explanations in a way you can understand it. I hope both of us can eventually find an answer and manageable solution to treating our pain symptoms. Take care of yourself.
Hey do you get a cool sensation on the affected side with the tounge pain everytime I breath in I feel a cool tingle like pepperment tingle? Hang in there wellington .
Did you have tongue pain? If so, please describe. Also, I thought Geniculate Neuralgia didn't affect the tongue. Can Eagle's not be seen on CT Scan, yet you have it?? My doctors told me I didn't have Eagles after looking on CT?
viperbone said:
Hello Wellington90,
Yes I do suffer the same symptoms as you and I did have eagle's syndrome. I had a right styloidectomy on July 25, 2013 but those pains you describe still persist with me on my right side of my face. Please check out information on Geniculate Neuralgia which seems to fit the pain symptom pattern you are describing. I am just throwing that information out there to you as a possible cause for your afflication. But please check out Emma's list of doctors. She has been kind enough to gather a useful list of medical professionals that you can check out. Eagle's can also cause those symptoms, so it is really important to have the proper scans looked at by someone who is familiar with the condition. If you can find a neurologists/ent/head and neck doctor, that would be your best to cover all areas. Geniculate Neuralgia is also a rare condition but so is Eagle's Syndrome. Whoever you finally see, please question them about both conditions and the possibility of having one or the other. Don't let them discourage by saying "It's so rare." A lot of us on this site have won the lottery of "rare conditions" by actually having it. Good luck on whatever medical decision you make in the future and always be your own medical advocate and don't ever be afraid of asking the hard questions. Just get the complete answers and explanations in a way you can understand it. I hope both of us can eventually find an answer and manageable solution to treating our pain symptoms. Take care of yourself.
Wellington - Eagles usually can't be seen on a regular CT scan. You have to get a 3D or a CT scan with contrast to be able to see it. And the person reading it has to know to look for the styloids.
I had/have tongue pain. I’ve had both styloids removed (last one just 2 weeks ago) so I still have some pain. But the best way I can think to describe tongue pain is like a very bad sprain. I couldn’t chew or talk without a lot of pain. And now if I find that I talk a lot my tongue seems to get “tired”. Someone else may have a better way to describe it, tho.
Sorry I am late returning the discussion, but life happens and you have to take care of the other problems. In reference to the discussion about Geniculate Neuralgia, yes it can affect the tongue, lips, molar, nose, eyes and other facial areas. Yes I do have right sided tongue/lower molar pain and even a feel of numbness in my lower right lip. Did you have a 3-D CT scan with contrast? I had too many regular CT scans (I should glow) even from the Mayo Clinic in Jacksonville and no one even suggested I could have Eagles. I finally broke down and went to Pittsburgh to investigate the Geniculate Neuralgia problem with their top Neurosurgeons a year and a half ago, and the "extra symptom of something is poking in my right throat side" sent me to see their expert Throat disorder surgeon (who also was a neurologist/ent/brain nerve surgeon). He looked at some old CT temporal bone/sinus scans (2008 to 2011) and he spotted a problem which was confirmed by 3-D CT scan I had in Pittsburgh there in May 2012, I did have eagles on the right styloid side. The surgery July 25, 2013 definitively confirmed eagles because the styloid bone was curving inward very close to the spinal cord and 2 1/2 cm cut off. I was told by my surgeon that nerve damage may have already been done and that surgery may help with some symptoms but not all. I understood that before surgery. I still have hope that things will quiet down a bit more as the nerves heal which will take many months I was told. So there is still that hope!
Again, like Emma suggested, you need to schedule an appointment with a experienced medical professional who is familiar with and has dealt with Eagle's syndrome and that will not write you off as a nut. Most medical doctors don't have a clue about Eagles and just brush you aside. Symptoms vary from person to person, so some people may have off the wall not typical symptoms that just don't follow the normal pattern. I still wish you the best luck in finding a caring medical doctor that will actually listen to you and help you find an answer. Take care of yourself.
Wellington90 said:
Viperbone,
Did you have tongue pain? If so, please describe. Also, I thought Geniculate Neuralgia didn't affect the tongue. Can Eagle's not be seen on CT Scan, yet you have it?? My doctors told me I didn't have Eagles after looking on CT?
viperbone said:
Hello Wellington90,
Yes I do suffer the same symptoms as you and I did have eagle's syndrome. I had a right styloidectomy on July 25, 2013 but those pains you describe still persist with me on my right side of my face. Please check out information on Geniculate Neuralgia which seems to fit the pain symptom pattern you are describing. I am just throwing that information out there to you as a possible cause for your afflication. But please check out Emma's list of doctors. She has been kind enough to gather a useful list of medical professionals that you can check out. Eagle's can also cause those symptoms, so it is really important to have the proper scans looked at by someone who is familiar with the condition. If you can find a neurologists/ent/head and neck doctor, that would be your best to cover all areas. Geniculate Neuralgia is also a rare condition but so is Eagle's Syndrome. Whoever you finally see, please question them about both conditions and the possibility of having one or the other. Don't let them discourage by saying "It's so rare." A lot of us on this site have won the lottery of "rare conditions" by actually having it. Good luck on whatever medical decision you make in the future and always be your own medical advocate and don't ever be afraid of asking the hard questions. Just get the complete answers and explanations in a way you can understand it. I hope both of us can eventually find an answer and manageable solution to treating our pain symptoms. Take care of yourself.