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Eagle Syndrome - Online Support Group

Feeling frustrated

#21

Thank you, not as bad yesterday and today… the cold weather doesn’t make it any better, but Dr. appt. soon.

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#22

HOORAY! For your upcoming appointment!!! :clap:t3:

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#23

Feeling little relief that I’ve been referred to a specialized group.

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#24

Crevels70
That’s great news! Please let us know how things go for you at the appt with a specialist at the specialist group.

:blush:

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#25

Can’t believe it’s now march and I’m no Further in getting treatment been shunted back and forth between ent and head and neck surgeon I’m now aneamic and i also have vitamins d deficiency headaches are worse with the left side feeling like the pain I had with shingles I see pain management clinic next week and after getting yet another ultrasound upon which the doctor has stated the styloid on the left is very near the carotid artery and even he said he can’t understand why there not doing surgery both lymph nodes are swollen at front of neck and one on left side at the back of neck is size of a pea my thyroid is swollen and I have a high level of ana fed up is an understatement at least my GP is trying she has written to Mr Currie for a second opinion. :anguished:

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#26

So sorry to hear this Ams, but glad your GP is advocating for you. It’s so discouraging when no one will take the responsibility to do what’s needed. Maybe there’s a reason for it - the doctors in your area don’t have ES experience & afraid to take it on? Are there any doctors on the Doctors’ List for GB that you would be able to get a referral for & travel to so you can have an experienced surgeon take your case?

Swollen lymph nodes & irritated thyroid can be symptoms of ES. My original ES symptom was pain in the left side of my thyroid. People have even had symptoms of AI disease that have disappeared after ES surgery. With all the things elongated styloids/calcified ligaments irritate in the body, stimulation of an autoimmune response in some people wouldn’t be unexpected.

I hope you’re able to get REAL help soon. I will keep praying for forward progress for you.

:hugs:

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#27

Hi Crevels 70 -

How did your appointment go w/ the specialized group? Did they offer you any help or give you a referral so you could move forward in pursuing ES surgery? I hope your progressing toward a solution for recovery!

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#28

Thank you I’m trying to get to see Mr Currie in crosshouse hospital he’s done few surgeries I’m so desperate to get something done I’m considering a crowdfunding page to go private but hopefully I won’t have to x

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#29

I hope that you can get somewhere soon…good that your GP is on your side; could they maybe consider sending you to a skull base surgeon or a head & neck surgeon otherwise- they may not have done ES surgery but will be used to doing surgery in the area of the styloids. I’ve not heard of anyone who’s had surgery with Mr Currie in recent times, maybe he’s busy…as are all NHS surgeons!

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#30

I actually seen a head and neck cancer specialist but he had no idea about eagles just dismissed everything i said :disappointed:

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#31

Ugh. I was thinking this would be an alternative for someone that couldn’t find an ENT/otolaryngologist to do the surgery. You would think as long as they knew the anatomy and they were a compassionate doctor that they would be wiling to look at the research about the diagnosis and remove the problem. Maybe the guy you saw was just a not right for you.

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#32

I suppose in the scheme of things maybe he felt that cancer is more of a priority, but if your quality of life is rubbish…

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#33

That’s true was pretty scarry time x

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#34

I know you’d think so but he was extremely rude x

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#35

Thank you for asking, I went to my appointment in Newark, they gave me a 1 p.m. appointment, there were about. 20 people ahead of me, I was told that I would not be seen for 1 1/2 hours, my ride to Newark couldn’t stay that long. I rescheduled my April 1, 9 a.m, getting there earlier, so I wouldn’t be so far down the list of patients. I observed bring a University Hospital there were a lot of people there, like a clinic. Not like when you make an appointment with your Doctor. I’m just going earlier. Thank you again. I will post my results of this appointment.

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#36

Crevels70
Well, that’s disappointing. You’d think if they give you an appointment time, they’d honor that & not be so overbooked that they were 90 min. behind. Good strategy to get an earlier appointment. We will look forward to hearing how it goes.
:relaxed:

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#37

Sounds like the UK NHS! Such a shame you had a wasted journey; I hope your ride didn’t mind & that it will go better next time!

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#38

Yes I was disappointed because the right side is little worse. But I’m ready. Thank you

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#39

I didn’t realize that it was a clinic like setting. My son is taking me this time…

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#40

Omg that’s awful looks like you and me both had wasted appointments today my surgeon had decided it’s all in.my head IV to try amitrplyne for pain and return In 6mnths but thanks to my GP IV got a referral for Mr Currie in crosshouse hospital it’s on 8th of April so not too long to wait, current surgeon had said he doesn’t know of anyone who has been helped by surgery I feel so deflated but angry at same time we can’t all be wrong :pensive:

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