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Eagle Syndrome - Online Support Group

Loosing Hope

I had surgery on my right side augst 26th he removed a 7 cm styloid and ligament.I had severe infection and swelling due to no drain port.
It is now almost December and he has completely dropped my care I’ve sent him 10 pleads be cause I’m having severe pain in ear,side of face and eye.I can’t eat with out it hurting or drinking .It hurts to brush my teeth.Also when I put my right contact on. It shoots pain to my face and ear line area.He cut my ear and scar is very large .
I cry and that hurts . I am so much worse with these symptoms I have had suicidal thoughts because the pain is so severe.My other side is just as long and it is compressing on an internal cartoid artery.
I don’t know what to do. I don’t know of another Dr to help me .I can’t even drive or work…

@Helenee I am so sorry that you’re in so much pain! Can you at least get to a clinic to see any dr? I’m worried that you cld have an infection and that wld need immediate attention.
HUGS!!!:heartpulse::heartpulse::heartpulse:
Don’t lose hope!!! We’re all here to help each other!!!

Hi Helenee,

I’m so sorry you’re in so much pain. We have other members here who have been “dropped” by their surgeons when ES pain didn’t go away after surgery or they were told a second surgery wouldn’t help when, of course, it would. I think both of these scenarios show a distinct lack of professionalism & compassion on the part of these doctors.

There is a doctor in Oregon (a little closer to you than California/Dr. Samji) who’s done some successful ES surgeries. You could try going to him. Your incision is quite extensive, & there are probably nerves that were cut that are still healing. There is also the possibility that at least some of the pain you currently have will go away after your remaining styloid & ligament are removed. Another forum member wisely pointed out that when one styloid is removed, it puts your whole neck structure “out of balance” so the side w/o the styloid has kind of lost its support system. Until the styloid on the other side is removed to “restore the balance”, your symptoms on the right may be a problem.

Here is his contact information:
•Dr Joshua Schindler, 3303 SW Bond Ave OHSU Northwest Clinic for Voice and Swallowing, South Waterfront Center for Health and Healing Building 1, Suite 15, Portland, OR 97239, (503) 494-5947, https://www.ohsu.edu/providers/joshua-s-schindler/9EF420F1ED06418895F18EF1278ED60A?utm_source=gmb&utm_medium=organic&utm_content=59c4959b-a363-53b5-8065-7cbeb0ecee7d Has apparently done 18 sucessful surgeries, intra-oral and external.

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Helenee, so sorry that you’re in so much pain, even after surgery. The nerves can take a while to heal, even up to a year, so there is hope that some pain may well improve.
It does sound like it could be the Trigeminal nerves affected; there are 3 branches which cover the lower jaw & teeth, upper jaw & face, & the temple & eye area. Possibly the facial nerve too- have you seen a Neurologist? There are medications which can help with nerve pain- carbamazapine, Gabapentin, Amitriptyline for example if you’ve not tried any of those? It can take a little while for them to work, & sometimes people have to try a couple of ones before they find one which works. Ben’s Friends also have a facial pain group with more info & knowledge about this than we have- it might be an idea to have a look at their site?
Also is your neck still swollen? If so it might be worth seeing your GP/ PCP ; steroids might help with that, some members have been prescribed them short term to ease swelling.
Please don’t give up hope, members have had difficult recoveries but improved. There’s crisis line numbers on the left of the home page if you need someone to talk to, and feel free to keep posting on here.
I’ll be praying for you, very gentle hugs to you…

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@Helenee
You are fighting a huge battle and have come way too far to give up now! Isaiah and Jules have given some incredible advice. Please follow up on their ideas. You have work yet to be done and you do have what it takes. Lean on who you have to help you get to another doctor. We are here for you as well. Basics you already know but are worth hearing again - ice for swelling, elevate your head at all times, slow easy breathing. :heartpulse::sparkling_heart:

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oh I hate to hear a Dr. would be that in-compassionate. I am praying for you. Don’t give up it will get better. There are good Doctor’s out there that care. I hope you get relief soon!

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