Eagel's Syndrome

[Mini788]

I have Eagle's Syndrome and have for about 20 yrs. I am 52 yrs old and about 8 yrs ago my systoms got worse. I know this is a rare condition and it hard to find a doctor who knows little to nothing about it.
Recently my dentist took a panoral X-Ray and it seems that the elongated stylohoid has gotten worse. I have burning,tinging and pain of the mouth and tongue constantly. Pain run over the rightside of my face into my ear and down my neck. I have chronic sinusitis and recenlty started getting right ear infections.I can feel something in my throat on both sides and have severe pain when swallowing at times.I have been to several doctors but they call it atypical neuralgia. I also have sphenoid sinus surgery at Johns Hopkins Hospital. Recovered well except for a constant drainage through my nose,down my throat causing nausea and sometimes conjestion in my chest.I have a sinus and right ear infection at this moment  and that makes all my other facial,ear and neck worse.I might add that I have been to Johns Hopkins's Head and Neck Dept.
I do go to pain management and am treated with medications that helps me tolerate my pain also leave me miserable with their side effects.
Along with this pain I have c and s dengerative disc disease that causes constant pain in both legs which I have problem sitting and standing.
Just by reading this is there anything you can tell me to do. I am starting all over again with ENT doctors next month. I understand that this is a rare and almost unknown condition as my personal doctor has never heard of Eagel's
Syndrome. Looking for a doctor that is familiar with this demon. Thank you,

[hava]

I can tell you to do the following, and come back to report how it feels after 11 days.I am not a doctor, but this breathing technique helps the body overcome some symptoms.
Build up your timing gradually.If you feel tired or dizzy, stop and resume later.
Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

[Mini788]

Thank you for you answer. But I have tried this technique while going to a therapist and it didn't seems to help. I have tired just about everything there is. Even multiple times of acupuncture,every anti seizure med there. I now have to prop myself in a certain position while sitting and especially lying down. Cannot put any pressure on my right side at all. I sure the breathing technique helps some people and that is wonderful but I think I have had this problem for many years and ct scans shows it has gotten worse. I'm looking for a neurosurgeon that has knowledge in this type of syndrome that is so rare that most doctors has never heard of it. I know I had it for 20 yrs. or more and I am searching that doctor that can help me.
THX,Mini788

[hava]

The results of pranayam(breathing techniques) are very gradual and you need to allow 3 to 9 months.It is the duration, 30 minutes twice a day, which is important as well.If you continue the pranayam(at least once a day), while searching for answers, you will notice benefit over longer term.This is something which you do yourself everyday, and is very satisfying when you notice the first sign of improvement.At least your post will help someone else.

[Mini788]

Thanks you very much. Will be pleased to know if this post will or has helped some else.

[scpearl]

I have help for you.  I left you an email in your inbox. Check it and get back to me.

[scpearl]

Mini, I am writing to you to hope that same day soon that you will get this messege.  Please write back soon.  I have some information for you.  I have just been through the same thing as far as finding a Doctor for the Eagle Syndrome. I live in SC, and have called just about every major Medical University along the East Coast.  I have a few names of Doctors that have dealt with this, and one who just did my surgery  around about a month ago.  Please send an email back.  I would love to hear from you.  It is not often that I get to talk to someone just like me.