The Holidays are here:(…I’m broke Fat and in pain most days…I have TN or at least that’s there DX…even though ES has been brought up many times…I Fight with my Boyfriend all the Time as He Will Never Understand this and I’m Sick of Trying to Explain it! I’m Understanding why this is Called the Suicide Disease! I’m ready to Give Up! When You serve no purpose…why try? I Quit!

I’m so sorry you are having such a hard time. When you are frustrated with your health and symptoms and no one seems to help/understand depression is expected. I think most of us on here can relate and understand. It is even worse around this time of the year.

So have you been diagnosed with ES? Or has it just been brought up?

My advice to you is try to stay as positive as you can. I know that is easier said then done (I am not always the most positive person) but you have to try. Surround yourself with positive, understanding and supportive individuals. Situations like these (health and hard times) always bring out the true colors in people. Just keep that in mind as you go through this.

Don’t give up! We are all here fighting the same battle. If you can’t find support at home, you can find it here. We are all here to help!

I hope you feel better soon!



I am sorry that you are gong through such a rough time. I too understand the frustration as I have been recently diagnosed and am finding it hard to deal with. I have TN and now they say I have ES too. The doctors that I am seeing are not sure if this contributes to the TN or not. I am thinking of having the surgery but the catch is the doctors don't know if it will make the TN better or worse. I am still in the process of gathering information. I wish I could offer you more. Just know you are not alone and so far the people on this site have been very helpful. I can identify with some of what you are saying but don't give up...keep going, keep fighting!!!!

Praying for you!!

I have not been diagnosed with ES…but I feel like I have the symptoms and the dental specialist said in his report that I have an elongated calcified stylohoid process…don’t that mean Eagles a???Anyway I’m

Worried that if it’s ES it can cause permanent damage to the myelin sheath of my nerves??? Maybe I’m wrong but…the Dr Don’t seem to know what they are doing…just want sum answers it’s been 3 yrs of pain n questions

Lisa, I know you mentioned in another discussion that you can go to Wisconsin, but not Ohio. You need to get this fixed and Dr. Forrest in Columbus is one of the most experienced doctors we are aware of. Why can't you go to Ohio?

I believe you have me confused with another Lisa…:slight_smile: I’m From Michigan and Doctor at the UofM Hospital…long Story Short…I’m diagnosed with Atypical Trigeminal Nueralgia after a Panaramic view of my jaw my Maxillofacial Specialist Reported See an elongated calcified stylohoid process…when I looked into it I Found ES, which seems to mimic my symptoms…Just a Really Curious if This is Truely an issue if surgery could fix my TN Also??? I’m so Confused about all of this…eating so many pills feeling dumber by the Day! Just want the Old Me Bsck!!! ),:

Oh - sorry Lisa - I sure did confuse you two. I'm sorry you're going through this. I've read that Eagles can cause TN, so it's quite likely that the elongated calcified styloid you have is causing your pain. Can you get to someone who knows about Eagles?

It's so hard getting someone to help us - and no one around us understands at all what we're going through. This whole Eagles experience can be so frustrating. (and painful and lonely)

Lisa said:

I believe you have me confused with another Lisa...:) I'm From Michigan and Doctor at the UofM Hospital....long Story Short...I'm diagnosed with Atypical Trigeminal Nueralgia after a Panaramic view of my jaw my Maxillofacial Specialist Reported See an elongated calcified stylohoid process....when I looked into it I Found ES, which seems to mimic my symptoms....Just a Really Curious if This is Truely an issue if surgery could fix my TN Also??? I'm so Confused about all of this....eating so many pills feeling dumber by the Day! Just want the Old Me Bsck!!!! ),:

Is there any recommendations for Dr?

I would say Dr. Forrest in Columbus OH. He's got lots of Eagles experience and that's not super far from Michigan. I don't know if there are any doctors with Eagles experience in Michigan. Have you see the list that Emma compiled? She has a list of doctors who have performed successful surgery on at least one forum member and it's a good start in looking for a doctor.

No I have not seen the list. I go back to see my Nuero after the First of the Year and I will be discussing this with him! Right now I’m a guinea Pig…they’ve been trying the sphenocath procedure on me with little relief!

Lisa: I am sorry you are in pain and so frustrated! Stay positive and keep seeking answers. I am from the Grand Rapids area in MI and have an appt. at. Henry Ford with an ENT who agreed to see my for Eagles. I have to see if he has any/much experience with surgery for the elongated styloid and will keep you posted. I had an appt with an ENT at U of M and he declined to see me after he looked at my records. Good luck with getting answers!


I am attaching the latest list. It is in a discussion previously, but I will attach it right here. I hope you can access Excel files. It is not a recommendation. It is a list of doctors that have had some success treating our members. I must say though that some members have seen some of the doctors and not had the best of outcomes. From what we know, the surgery is not 100%, but this is the best we can do because it is hard to find anyone who even knows what Eagles is. It has been over a year since I started compiling the list so I do not know if there are any in Michigan. Good luck. I do hope you get help. We care and hope you get better. Like Krista says problems like this bring out the true colors in people so it is a thought going forward.

201-EaglesSyndromeDoctors112014.xls (43 KB)

I have to tell you a few things. If your dental specialist told you that, you have been diagnosed with Eagle’s Syndrome. My dentist diagnosed me with the same title 10 years ago.

Next, I know it’s all frustrating and painful but honestly, the more you think about it, the worse all your symptoms will be, the more stressed you will be, & the more you will flare up. It’s a vicious cycle. I would be willing to bet that your TN is caused by the eagle’s and is another symptom unfortunately.

Last, when you have an “invisible illness”, most often the ones you love the most are sympathetic at first and then seem annoyed over time. My husband of 10 years and the father of my children was SO caring and understanding at first. Now after dealing with this over time and the surgery he just stares at me when I complain or mention new symptoms. Recently he stated I had become very negative about things. No, I just need someone to vent to. It’s very upsetting and I am sorry your boyfriend is making you feel that way. As if we don’t have enough to deal with. I have found this group and my parents have been a huge support system for me and a lot of crying in the shower haha. I hope you find a surgeon soon - surgery isn’t so scary and it was a big relief for one side and now another to go. I also found I have a huge nodule on my thyroid that will be biopsied in a week for cancer. That’s not to scare you but instead I’m relieved because without all this I wouldn’t know it was there!

Anyway I hope you find relief (dr) soon and have a Merry Christmas! Chin up- it will get better one day!!