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Eagle Syndrome - Online Support Group

Feeling frustrated


#1

My symptoms are
Reduced hearing on left side
twitching in right eye
Severe neck pain
Choking
Stabbing pain in neck
Headaches
Sinus pain
Altered taste and smell (Ammonia)
Iv had all these symptoms for over 5 years iv been to many doctors a locum said it was all in my head
2yrs ago I got a scan of my jaw because of pain and it locks they diagnosed osteoarthritis but I visited my dentist for a filling and she actually listened and referred me to a maxillofacial surgeon he showed me the scan I had done and diagnosed eagles syndrome he was young and quite excited about it he also said he was very surprised that his colleagues at ENT had missed it i could bloody see it looks like a fish hook and it’s approx 40mm in length, unfortunately he had to refer me to a different maxillofacial surgeon but he has ordered a cat scan and MRI.
I got an appointment for October and now they’ve cancelled it until December I’m furious and in tears at the thought of not knowing what is going to happen :disappointed_relieved:


#2

I’m with you on this one. My appointment for Friday was just cancelled, and I have to reschedule around an incredibly busy work schedule. I had already made reservations to board my dog so I could make the four hour trip to the consult appointment. Yes, I am in pain, but I just make sure and surround myself with people who can make me laugh until I get through this. Lots of prayers, too. I will say some for you, too.


#3

Awe that’s lovely thanks for your prayers x


#4

That’s really frustrating, especially as you’ve had symptoms for a long time too. I think everyone on here will empathise with you, most members have had a difficult journey. I had my surgery cancelled the day before it should’ve been done- that was just a bit stressful! The NHS can be amazing, but very difficult too…
There are some ideas for pain relief in the Newbies Guide section if you’ve not already had a look while you wait. But feel free to vent on here, we do understand.
I don’t know what the system is in Scotland, or your financial situation is, but it might be worth paying for a private consultation; you can do that to jump the queue a bit but still have the rest of your treatment on the NHS if you’re really finding the wait tough? My husband did that a few years ago when he had a risky heart condition, but still had to wait a couple of months just for an initial appt. I think it cost about £200 then, but was well worth being seen within 2 weeks- he’d had this heart condition for over 10 years, & was getting alot worse before being diagnosed.
Thinking of you& will pray for you too…


#5

Thanks Jules I phoned them up and best they could do was to bring it forward to November so that’s a bit better im already on cocodamol 30/500 and tramadol for degenerative disc disease and I have another heriditery condition called osteochondromas which causes bones to grow out of joints x


#6

A little improvement in the time frame… If you’re thinking of surgery though, maybe an Otolaryngologist/ Skull Base surgeon might be an idea to try & get a referral to, unless you know if the Maxfac. doctor you’ve been referred to definitely does ES surgery? That might be an idea to check that out just in case you have this wait, get there & find out that they can’t help you & you have to be referred to someone else? I know quite a few doctors these days have their profiles & specialities online, so you could try looking? (The only one we know of in Scotland who has done surgery is Mr Currie, Crosshouse hospital, Kilmarnock- of course there could be other experienced surgeons out there that we don’t know of!
Sounds like you have enough on your plate as it is with the other conditions, so I hope that you can get this sorted soon :hugs:


#7

I will check his speciality it’s a Mr Vikas Sood a very nice man he operated on my mouth to remove 2 nodules that proved to be a benign sqaumas cell carcinoma that was 3 yrs ago but I’m still going to my GP to ask them to write to Mr Currie if not I’ll do it myself from my NHS email I’m currently employed by them but iv been off for months thanks Jules this site is a godsend x


#8

Glad to hear you were able to get your appointment moved from Dec. to Nov. Every day less that you have to wait will be to your benefit.

:blush:


#9

Thanks isaiah and yea Def x


#10

Isn’t it CRAZY that any move up on appointments - even a few days - seems like cause for a huge celebration!?!?!?!


#11

I know it’s terrible isn’t it :cry:


#12

I know :frowning: It’s so frustrating. I have been seeing ENT for years and they really didn’t care less. Eventually with some persuasion my own Doctor refered me to Mr Axon at cambridge Hospital who immediatly ordered a CT cerebral venography with contrast. I had the letter for the scan within two weeks and back to see him for results on 30 November so all pretty quick. It really helps when a Doctor knows what he is talking about. He was nearly able to tell me my symptons himself. What a relief to know someone listens. At the minute my neck feels swollen and inflamed at the front. I can feel the styloids at the back of my throat near my tonsils both side. More prominent on left side and that is the saide i have most pain. On turning my head i hear them crack and move. I can’t move my head to the side without stiffness and it hurting. Sometimes if i swallow while head slightly turned i feel such pain and it poping. My head feels like it’s in a vice grip. I am meant to be starting work at the hospital Monday as a HCA Nurse but worry if i will cope. Bending down is another issue feels like im squashing everything. I also need to lose a lot of weight. I’m just wondering would that help.


#13

So glad you have your follow-up w/ Mr. Axon coming up before too long (though it probably feels like forever). It does make a difference when you get to the right doctor who does the correct thing straight away. Your symptoms sound miserable & I hope Mr. Axon is able to schedule you for surgery soon after your follow-up.
I can’t imagine doing any sort of nursing work w/ ES since any lifting or turning of a patient will put stress on your neck which could exacerbate your symptoms. Just be really careful!!!
Losing weight is always good. The only benefit I could see for ES is that having a slimmer neck might put less pressure on the styloids/ligaments (if they’re calcified), but that’s only speculation on my part as the angle & thickness of the styloids/ligaments alone could create your current symptoms.


#14

I hope that the time soon passes for you… I must admit I wouldn’t have been able to do any lifting when my ES was bad, I don’t know how much HCA’s do nowadays, but I hope that it does go okay for you. Losing weight would certainly help with the recovery after your op- I recommend the 5:2 diet!


#15

Looks like we’re both getting same tests and return in November for results, regarding your job get referred immediately to occupational health and they can do an assessment but theses days there’s no lifting but you could be bending over etc x


#16

Today I’m feeling frustrated and tried of these headaches, dizziness, and all the annoying symptoms that are interrupting my day. Having my first appt 1/14, just hoping that these Drs know what to do. At least this group understands what’s going on. There is no one to share and talk to who can understand.


#17

We definitely do understand, feel free to vent on here…thinking of you & hope that your appt. goes well!


#18

Hope all goes well I’m feeling rather deflated just now need to wait until Monday to see my own GP regarding a referral to Mr Currie without this group i would go mad x


#19

We are so happy we can be here for you & especially that we can relate to what you’re going through!


#20

I hope today has been a better day for you, Crevels70! Fortunately w/ ES there is an occasional reprieve from symptoms. I hope you get that reprieve this week.