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Eagle Syndrome - Online Support Group

WHY ME? Why not me.... Finding bad news every test just no Eagle

Honestly it’s 4:50am & I’m hoping my ceiling fan comes down and ends this misery. My life has been challenging is an understatement, but through aging wisdom & personal success rising from the ashes I couldn’t of wrote this if it turned into a movie it’d not be true. I’ve ALWAYS kept positive attitude it could be worse I need to be grateful it’s just this. But this is actual torture I’m pretty sure if I was tortured at some black site I’d laugh wondering what there torture did. Ok speed up last convo found out hospital lost my test results from April & my young new pain dr took me off muscle relaxer, benzodiazepines & pain meds. The test from April showed PTH level 189 I had a cat scan recently states Hyoid appears to be normal but unknown without comparison. Which made me think hmm cause everything else said unremarkable except tumor in sinus cavity I already knew about. My muscle spasms in neck are umm I looked possessed when it happens or neck tightening up and feel like my chest is trying to rip my face off. Do I sleep no nerve pain in face sucks my jaw constantly twitching & the ringing in my ears is LOUD!!! My balance is crap & I was prima ballerina dancing for 25 years I loved it I also learned to endure pain dance even if in pain and smile like nothing hurts ironically choosing final dance for this site I felt that something is really wrong & I may never dance again even just in living room. Well so MRI happens of course with PTH mix up I was taking no chances & grabbed my own copy. See a year ago I had a terrible fall & was treated poorly by an Er dr no exam, no questions 4x said you can leave I’m not giving pain meds I go I don’t want anything just please check my neck please he told me CT was normal nothing wrong I probably didn’t fall. Unbelievable huge nose & neck & black eye he didn’t even touch me. Well MRI showed a spinal cord injury that’s less then 2 yrs old so likely that fall. So now still don’t know about Eagles but currently looking for neurologist that focus on brain & cervical stenosis & endocrinologist who is very good (heard to many botched surgery stories) I’ve got nothing left this pain is absolute cruelty I don’t sleep or I fall asleep and wake I’m up hr later screaming in pain. Tonight I tried laying on our hardwood floors with tennis balls underneath me to try and redirect pain signals. And rt now I have no one to talk too or really help partly my story sounds crazy & I’m tired of saying yes parathyroid has been bad at least since April but I’m not being lazy like you think I just found out myself or no the ER dr said I was fine this Test was recently. Then they say what are you waiting around for??? Idk if I’m speaking Sanskrit but medical ERRORS have had answers forever not me I just got those answers geesh
& then the fear of the current muscle spasm start closing my throat off again or and now no sudden movements to protect my spine drs orders until he sees me I think knowing it’s two yr old injury my level of you’ve got to be kidding I’m pretty sure I entered the twilight zone somewhere recently I just don’t get it
Thanks for letting me rant I needed a vent stew thanks again!!

Hi final_dance,

I’m glad you vented. Now pick yourself up & get back into the battle. You can win this. It will take perseverance. Finding the right doctor(s) is the key & that means leaving “no stone unturned.” It sounds like you’re on the path to doing that. At least you know you need to take care of your parathyroid situation & a neurologist can at least help you assess the origin of your nerve pain. Please make sure to take a copy of a paper about ES with you to both doctors. Any doctor you talk to needs to know some of your symptoms are in line with Eagle Syndrome, & if you have a report that backs that up, it will potentially help you get the tests you need to determine if ES is part of what’s ailing you. I will put a link to an excellent paper at the end of this post.

I’m glad your hyoid bone is normal but what you need to look at to determine if you have ES are the styloid processes & stylohyoid ligaments. Unless the radiologist is specifically requested to check them, the styloids & stylohyoid ligaments are often overlooked (even when they aren’t normal) in a neck CT scan.

You and dharmadel have something in common - unfortunate ER doctor experiences. I’m sorry for the way you were treated after your fall. That’s really inexcusable. I do hope you’re able to find someone in the medical field to help you soon. I will be praying for that.

Here’s the article link. Print it & carry it with you wherever you go:

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Isaiah’s given you good advice, so won’t repeat any of that! It is so hard when you have to keep fighting every doctor & are in so much pain…I feel for you- have you got anyone who can come with you to appts. to help advocate for you?
A couple of things which might help you- Bens Friends have a facial pain group you could have a look at, they have more detailed info on different nerve pain medications which might help? You don’t have to join the group, you can read the discussions still. Also as you’ve mentioned neck spasms, just wondered if you’ve looked up cervical dystonia? Might be worth looking into as well as the ES diagnosis.
When’s your appt. to see about the spinal injury? Will be thinking of you :pray:

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Thanks guys and gals! My appt this week did not go well with my primary he’s the only dr left I’ve known forever and idk what happened other day. I almost got the feeling he thought I was “adding” on things to get pain meds back which I didn’t ask for my concerns were the severe spasms causing difficulties breathing and swallowing along with different headaches and loss of sensation in right leg causing me to limp or drag foot and my gait/ balance is way off. He said I’m jumping the gun and not being patient we’re just starting the work up. Idk I’m ready to scream but I can’t or my jaw spasms & my voice strains. I have virtually all new specialist who no way could of read my complete file and none of this is new I believe it’s just gotten so much worse because of not only pain med taper but muscle relaxers used to treat most of these conditions. I think my dr was annoyed when I questioned the radiologist background but my scans were sent to a radiologist in a small hospital up north to be read and I can’t count the number of times radiologist have done a horrible job of reading anything. Anyway dr refused to forward the final request for appointment with neurologist & endocrinologist but he ordered a brain MRI to check for damage or tumor which fine I asked for that over a year ago. Oh and the ringing and swooshing sounds driving me crazy in my ears. Also if you look up what the radiologist said about C4-C5 it says spinal cord injury and can relate a lot of my symptoms to those nerves & injury my face goes numb when I look left. I’m tired of going in circles & with my med taper my brain is extra excited to send pain signals out!!
I did look at Cervical Dystonia something is definitely wrong with the muscles the lightening jerks it mentioned I think I had those the night I passed out! I looked like a poltergeists movie my left ear hit my shoulder 3x like whap whap felt like a ghost was going to break my neck.
I have someone that can go with me to appointments- it’s just this sounds bad but today at thanksgiving I couldn’t eat cuz of that electric shock feeling under tongue & got to sit and listen about 2 other family members who recently had major problems & how they were tough the drs thought because they dealt with this whole time it’s sooo unbelievable and when they get sick/hurt they really get sick/hurt. As I’m listening to all of that with my empty plate I wanted to scream that’s not tough that’s stupid you don’t wait a year if you can’t breathe.
I never care for what people think but it is annoying when people think because you went to the dr so why is there still a problem or assume if nothing is found right away nothing is wrong. But another day and another week. I’m determined to get better it’s just hard when I feel some days are torture. I’m just really tired … thanks for the encouragement it is very helpful to have a site where I can go to where opinions are wise educated and supportive! <3

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So sorry that you didn’t get the answers you wanted…& for your experience with family. Have you got a copy of the scan or the report? You could use the software in the link on here, & make a 3d image.
I’m glad that you’re feeling determined to get answers & get better, keep strong & keep fighting, you sound like you are a tough person, keep drawing on that :+1:

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final_dance,

You’re amazing! Your years of disciplined dance training & the pain you suffered being a prima ballerina will pay off now. Keep pressing forward as though you’re preparing for the performance of a lifetime because that’s really what you’re doing.

I’m sorry I’ve forgotten if you’re able to go out of state to see someone who is more experienced w/ ES. You could try sending your CT to Dr. Samji in CA & scheduling a phone consult. He prefers to read the CT himself & do his own measurement of the styloids & assessment of the stylohoid ligaments. Another option would be Dr. Cognetti or Dr. Newman in Pennsylvania. There are doctors in other states nearer to you, but I don’t know if they are as experienced w/ ES.

Here’s the link to the ES doctors’ list so you can decide what works best for you.:

I hope you find the help & support you need very soon.
:hugs:

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Thanks I needed both those pep talks. I also wonder if mentally I’m second guessing the drs due to the amount of computer errors this year that have slowed my life getting put back together; are they protecting themselves or helping me.
I can go out of state the cat scan was done 3 hrs away but I might be able to have another way to get actual scans.
Also I know many symptoms cross over c4-c5 spinal cord injury symptoms, Hyperparathyroidism & Eagles Symptoms & I need to have someone help me separate the symptoms into categories some crossover too. This pain is horrible & unimaginable but pain is inevitable suffering is optional. My muscle spasms cutting off my oxygen however and the blurred vision & walking into walls & dragging right foot & explosive ear ringing & waking up choking from electric shocks to throat one of these times I won’t wake up after I pass out. I’m not afraid to die at all, but if I wake up needing a wheelchair for life or am in a vegetative state because of computer errors in medical system. At least my new pain dr and older PCP know what Eagles syndrome is, it’s just frustrating to me it’s obvious and simple with what’s wrong & I’m on the verge of crawling back into bed and calling it quits this has been a 3-4 year battle and my symptoms got sooo much worse when they took majority of the meds away.
Thanks for your input I’m going to find my inner zen over next couple of weeks and then pick back up and fight back

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Hi final_dance,
I have spoken with @Kay who had her ES surgery with a doctor in Detroit with good success. She is a great source of information there and might be of help to you if you want to PM her.
Your road is a rough one, but sounds like you are slowly moving in the right direction. Keep up the good fight, you are not alone in this mess!

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