I'm a 23 year old male from Kansas and I've just been diagnosed with Eagle's syndrome. I actually diagnosed myself after two long years of pain and suffering without knowing what the problem was then had an ENT check it out. X-rays came back and it turned out I was right.
Basically I'd really just like some advice. I'm really scared and so sick of being in pain and having all of these problems so I was wondering how successful styloidectomy can be. How often does something go wrong with this procedure? If it's successful can it really cure the neck/throat pain, Eustachian Tube Dysfunction, and TMJ issues?
Also are there any activities I should be avoiding/doing to help my symptoms? Any supplements that can be used to help?
These problems are ruining my life, very quickly. I was in graduate school but had to drop out because I couldn't concentrate. I was fired from my job for the same reason. I'm completely unhappy and have been self-medicating with prescription painkillers, which limit the pain but I'm sure isn't an intelligent move.
Hi Ty Glad you found out what was wrong with you finally a lot of us went through years of not knowing to I almost went 10 years ,My surgery I had back in July 2010 fixed a lot of issues but not everything, I had no bad issues from the surgery and would do it again in a heartbeat but I was disappointed it didn't cure everything but been trying to appreciate what it did help.Take care Brother
Thanks for the reply. That's good to know. As soon as I'm back on an insurance plan, surgery definitely sounds like the best route I can take.
Deleone said:
Hi Ty Glad you found out what was wrong with you finally a lot of us went through years of not knowing to I almost went 10 years ,My surgery I had back in July 2010 fixed a lot of issues but not everything, I had no bad issues from the surgery and would do it again in a heartbeat but I was disappointed it didn't cure everything but been trying to appreciate what it did help.Take care Brother
Ty, the only real cure for Eagles is surgery and there are lots of people on here that have been helped by surgery, I'll repeat something that's been said often, but the best thing to do is go to a surgeon who has experience with Eagles and get an external procedure done where they take out the whole styloid. For most people it means travel to go to an experienced doctor, but the final results are worth it. Look on the forum for Emma's list of experienced doctors. I think the one closest to Kansas may be Dr. Forrest in Columbus Ohio. Another good option would be Dr. Samji in San Jose CA if you can travel that far.
There are quite a few of us who went to local doctors with little or no Eagles experience who had intra-oral procedures where they took out part of the styloid, and then continued to have some problems until we could find an experienced surgeon to do a revision surgery to take out the whole thing.
I agree 100% with heidemt. You really need to see someone who has had some type of experience with Eagle's syndrome. Please check out Emma's list of experienced doctors and hopefully you can find one near you. Also, be sure to get your medical scans and records from the physician who diagnosed you. I am assuming you will have health insurance coverage 1/1/14. Make sure whoever your insurance company will be that this surgeon or doctor will be in their list of providers. Three months out of styloid surgery, I still have some symptoms but I have hope that with time they will subside. Good luck and I truly wish the best for you in whatever healthcare decision you make. God bless you!
As you can see from the posts, having ES with all the medical establishment available is awful. I'm so sorry you have the added insurance issue. I really hope the new laws, especially the existing condition rules benefit you. You have received the same caring attitude from Medicare and insurance companies that we experienced from many doctors-they basically have hung up on us.
I waited 10 years of searching for doctors before finding one that would do the procedure and then my insurance cancelled the procedure and I needed to start again. My hospital sent me to a doctor who removed it in 2 months, not 2 years. I'm sure this was an accident-haha! I am now 2 months out of surgery and have a lot of symptom relief now. All the symptoms you have could be due to the elongated styloid process; TMJ, eustacian tube pressure, hot ear pain, throat pain-I coped with the pain meds but also heat packs, ice packs, ice cold water held against the part that hurts just to numb it. Yoga, meditation, stress relief helped too but the surgery is the cure and again I hope these new laws help you.
In 1990 I had the same symptoms the right side and it was removed and all symptoms ceased. Viperbone, Heidmt and Deleone have all been huge support for me since I found this site-I thought I was alone and the doctors made me feel like an oddity. Emma's list is great and ask about any doctors there. I can give you private info since negative info is not good to post-but there are plenty of doctors to run from. The people here made me feel like part of a group helping each other cope.
With a 25 year surgical history, 4 surgeries to remove 2 styloids, and encountering the best and worst of the medical community, ask any questions you have and we here will use our collective frustrative knowledge to help you. Plus some really great success stories! No sugar coating, this sucks.
take care Ty, stick in there and don't give up; that is what we have all done to get this far with out strangling a doctor (unless someone is hiding something they want to tell the group !)
I'm the sarcastic snarky one which the doctors don't appreciate but this site seems ok with it-right guys?
And now I think I don't get to go to doctors for this anymore!
Ty, the one trick that worked wonders for me was something I read on this site: eat tons of popsicles. I'd eat 20-30 per night by the end of it. I couldn't sleep without them. I think they must have brought down swelling and numbed the nerves, or something. Anyway, it worked wonders.
Also, I wore a soft neck collar (from a drugstore) while driving. Without it I would have terrible pain and lots of weird symptoms whenever I drove.