HELP NEEDED EAGLE SYNDROME

[scpearl]

After two years of not knowing what I had, I have just been recently diagnosed with The Eagle Syndrome.  It took me two years to have it discovered, I do not want it to take another two years before I can get some help.  I called the Medical University of SC, and no ENT there has ever dealt with someone with the Eagle Syndrome before.  It was the same for Duke Medical University.  If these big Medical Universities have never dealt with the Eagle Syndrome who has?  Can anyone help me find someone knowledgeable enough about it to help?

Thanks,

SCPearl

[brenda99x]

Go to livingwitheagle.org.  they have created a list posting the ENT's who have helped with styloidectomies (surgically shortening the styloid processes).  I fought with my eagles for over 25 years before getting a correct diagnoses and after another year and a half I finally found this site which helped me locate my surgeon,

[brenda99x]

Go to livingwitheagle.org.  they have created a list posting the ENT's who have helped with styloidectomies (surgically shortening the styloid processes).  I fought with my eagles for over 25 years before getting a correct diagnoses and after another year and a half I finally found this site which helped me locate my surgeon,

[Suzielpenn]

Can you give me his name?

[onrystormy]

well I was only diagnosed a few months ago but I also have begining stages of barrets hihertle hernia severe acid reflux and had l-4 and l-5 shaved off becuase of pressure on the syatic nerve which now the scare tissue has attacched the same nerve with more dynamic results than before the back surgery any way I am only 43 yrs old and I'm falling apartI went off all nacotics and have been tylenoling it and extra sleepy time tea which seems to help some what to sleep. Well I have one thing to say to the people out there is this eagle syndrome takes the cake on top of all of that nobody really understands it or knows what it is I have found more out tonight then since they diagnosed me I thought i only had a bad ear infection But I've been having trouble swallowing for several yrs small stuff even Well to get to the point Sat. the esqrutiating pain started in my ear and throught I tryed talking to the doc after all to get the surgery scheduled but like so many of us now days my Job closed it's doors then to top it off My deductible went up 3 times fold .Tue. night I went to the Emergency after 2vicodine 10/325 to no relief at the emergency rm the gave me ashot of dilanta ? it didn't work then another of something else which only worked from 8PM to 115am to end this today which is thu. the sharp pain has subsided for now any way but still in pain The Doc asked me if I had psycological problems because I had stated If I would have been able to remove whatever this is even if it took putting a hole in my throught was very tempting Not That I would Or could but nobody seems to understand how much pain I was in the last few days and all looked at me like I was nuts so What do I do Now

[Nonniella]

I have all the symptoms and my hyoid bone hurts all the time.
ENT said I have LPR (throat reflux) but medicine for 3 months has not helped at all.
I have had GERD for 30 years and I know about hearburn and acid in the throat.
This has been coming on for 2 years, funny feeling when I swallow, throat tickling and failing for no reason, ear, eye and teeth pain.
Finally in June 08 the pain in my throat is much worse, my vocal cords get so tired and sting and ache. Have an apt with new ENT tomorrow, hopefully he can run tests for this.
Did anyone else have vocal cord pain with this?

[Totie]

I was just diagnosed with Eagle Syndrome last week. My ENT was doing surgery for complete removal of the submandibular gland (sialadenitis), and he discovered the calcified ligament that he said was also causing me so much pain and removed it. I would go to an ENT. The surgery went well, incision looks great.

I think ENT are the ones who treat this.

[Erin369]

I had my styloidectomy done by a great ENT surgeon at the Mayo Clinic in AZ. He had done the operation many times - both intra-orally and through the neck. I had mine done intraorally. Everything went well.

[Dr_shreekant]

Eagle Syndrome is a disorder caused by irritation of the glossopharyngeal nerve by the styloid process (never mind the medical jargon!!). It can be remedied by a neurologist by drugs used to treat other neuralgias. The role of the ENT surgeon is for resistant pain, whereby a surgery called 'styloidectomy' is done. Also, the commonly used medical term for Eagle syndrome is 'Glossopharyngeal neuralgia'. Try approaching the ENT surgeon again with this term.

[PaulMD]

Hi there.

I understand your predicament.  I believe that even if the centers you've consulted have no definitive experience with your condition, it does not necessarily mean that they can do nothing about it.  I suggest that you discuss with them regarding holding a multidisciplinary conference (where a lot of doctors convene o discuss a case) and present your case so that the inputs of all the doctors can be heard and hopefully come up with a solution.  Who knows maybe someone in the panel may actually have the experience in dealing with your condition.  As they say, 2 heads are better than 1, more so 40 or 50 heads.  I hope a solution can be found soon.  Regards and God bless.