Been reading so many stories...Here is mine

[Donoel]

Hi I am new to this group. I am 34 years old. I feel as though I am someone that’s been experiencing symptoms for years but have been wrongly diagnosed or dismissed. I remember as a child feeling like I had a tooth pick stuck in my throat for months on end. I went to the doctor and evening looked fine. I was a kid that got strep and ear infections constantly so it wasn’t abnormal for me to have throat and ear sensations. When I was about 25 I suddenly felt like my throat was being squeezed and couldn’t swallow. I ended up in the emergency room 3 times where they said everything from possible MS to allergic reaction. I ended up going to a GI doctor who did an endoscopy and couldn’t really figure out anything wrong so said it was probably GERD caused by anxiety and gave me omeprozole and sent me on my way. Fast forward to 2020 I was eating dinner and felt a loud POP and felt a stabbing pain radiate to my right ear. I went to see an oral surgeon who looked at my scan and said “I think you have a fractured styloid… I think it could be eagles syndrome.” I was referred to an ENT since this oral surgeon said he hadn’t ever seen this in real life. The ENT basically poked around in my throat and said he didn’t believe it was. The pain seemed to go away after a few weeks and I forgot all about this potential diagnosis. In the last year and a half I have felt terrible migraines, neck and shoulder, jaw ,ear pain especially when I push my jaw forwards. I get a clicking sound in my throat almost like my esophagus is malfunctioning. The pain feels deep in my head like a dull ache mixed with some zap like pain in my throat when I swallow. i also have had a swollen lymph node that is directly under my ear. The base of my tongue feels as though is has a canker sore permanently there. The pain is all on this same right side. Doesn’t seem to get worse if I move my head it’s just constant and tends to get worse as the day goes on.
I have been to an ENT who didn’t seem to know anything about ES as well as a TMJD and Headache specialist who said he agrees that the pain sounds like ES although he truthfully does not have much experience with it either. I just feel like no one can tell me what’s going on and I am just so sad and depressed feeling like my life will never be normal again. I just got married in September and bought a new house and I just can’t even enjoy anything anymore because I’m so uncomfortable.

I met with Dr. Constantino 3 weeks ago who said it sounds like I have “Classic Eagles” and that it looks like I have a little harpoon in my neck on the right side. I am awaiting next steps which is to get a 3D CT. I keep calling his office and they keep telling me the doctors notes haven’t been sent over to insurance yet. It’s been 3 weeks so I have no idea if this is normal. I am trying to be patient.

In the meantime my primary has prescribed me Lyrica. I have been getting horrible headaches but the nerve pain in my tongue and throat area seems more manageable. But I don;t know if I should stop taking this medication or push through and see if the headaches get better. I also feel like my lymph nodes seem more swollen when taking it.

I am just so exhausted and feeling so defeated. I desperately want my life back. Some days I really have thoughts that this isn’t even a quality of life anymore. I feel trapped inside my own body in pain.

Sorry for the long post thank you all for your guidance.

[Isaiah_40_31]

@Donoel,

I’m very sorry you’re feeling so awful & that you’ve met with several doctors who weren’t able to help you. Since you already had headaches as a symptom, I’d hope the Lyrica would help reduce that so again, I’m sorry they’re worse now. There are other nerve pain meds you could try which might not make your headache so bad: Amitriptyline & Carbamazepine are two others that are mentioned here with some frequency.

Swollen glands seem to be a symptom of ES for some of our members. I had them & they did go away after surgery. Mine were under my jaw as opposed to under my ear. I suppose it depends on which nerves are irritated as to which glands respond.

I would call Dr. Costantino’s office at least a couple of times a week until that referral gets sent. Don’t worry about becoming a nuisance. It shouldn’t take 3 weeks for a doctor’s notes to be sent to your insurance with our current, practically instantaneous communication abilities.

There is good news in the diagnosis you received from Dr. Costantino as vascular ES requires a more invasive surgery, but I am sorry it’s taking so long for you to get your CT referral. Once you have that, get 2-3 of copies of it on CD so you can send 1 or 2 to doctors on our list who deal with classic Eagles & not vascular. Dr. Cognetti in Philadelphia is a good choice does telehealth consults so you wouldn’t need to travel, & Dr. Annino in Boston is another good choice & likely closer to you. I think he also does telehealth consults but I’m not totally sure.

•Dr Donald Annino, Brigham and Womens, Boston (surgeries on several members), (617) 525-6500 Donald J. Annino, Jr., MD, DMD - Brigham and Women’s Hospital

•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html

We have one doctor on our list in CT who did surgery for one of our members but there is a note that we aren’t sure how experienced he is. It might be worthwhile contacting him.
•Mohammad Khaled, 85 Seymour St., Ste. 1003, Hartford. (860) 969-2290 (operates at Hartford Hospital) Mohamad Khaled, MD, FAANS, FACS | Hartford HealthCare | CT (Does base a diagnosis on the length of styloids, might not have done many surgeries but has done one successful surgery on one of our members?

[Kerri]

I am sorry to hear how bad you feel. You remind me of my son’s journey with this. He as well had problems beginning at a young age. He had a tonsillectomy as a teen after reoccurring tonsillitis. Its solved the tonsillitis but other problems began of feeling like something was stuck in throat, and irritation of the throat and tongue. He is now 29 and has been thru a hyoid bone shortening 8 years by Dr. Cognetti and as of 4 mo ago a double styloidectomy (3 cm and 3.8 cm). 2 yrs ago he got the canker sore feeling at the base of the tongue. It is always bad but seems to really flare up after certain foods, salt and spices, preservatives, and most any liquid but water and beer. He has had numerous scopes but there is never any sores nor anything abnormal. All allergy tests and acid relux testing negative. He also got bad headaches and neck pain which werent triggered by moving head. The latest surgery has helped those 2 a lot. Its the tongue that aches and feels like cankers and burns that drives him crazy. Dr. Hackman thinks it might be glossopharyngeal neuralgia. No meds really help much so i am glad u get some relief. We are waiting longer to see if any further improvements happen from the surgery. If u find out anything along the way, pls let us know. The doc did say to try nerve meds again since the surgery may have changed the nerve response now. My son has not done this. Interestingly, on his ct image prior to the styloidectomy it was not thought his jugular vein was impinged. However, surgery indicated it was and that explains the headache and neck pain relief. The same may be true in regards to GPN. The imaging shows nothing to indicate it but often doesnt until its found in exploratory surgery. The facebook group for glossopharyngeal neuralgia can be helpful too. I wish u all the best. We know how hard and debilitating this is. He too has not been married long and finds this pain and fatigue very depressing. Its hard when u feel bad and cant get answers. I pray u will. Glad you are going to docs. Dont give up, keep fighting the fight.