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Eagle Syndrome - Online Support Group

Has anyone in England had surgery

Hi every one . Has anyone in England had surgery in Bristol ? I’m seeing Mr Saunders in April. About my ES on both sides of my neck.
If anyone has had surgery was it one at a time or both together?
Which was the operation through the mouth or the neck. ?
When did you have the operation and how sre you now?

Good Luck Anash hope all goes well for you let me know what happens I am in the UK as well Southampton area. best wishes 2 U

Hi I’m from Torquay.i have been seen by a doctor in London who said he would operated on my problematic area, at the UCLH. I thought about having surgery there but then talked to my gp a little worried about pre OP and post OP as coming up and down from Torbay is a long journey.
So my gp has referred me to a ent doctor in Bristol I’m hoping to have my OP there. Nearer and will make me feel better being closer to home if anything happens or I need to see the doctor after post OP. X Thank you for your kind blessings

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He’s been mentioned on our doctors list for a little while, so someone must’ve had surgery with him at some point, but don’t know who I’m afraid, it could’ve been a little while ago.
I’d suggest going armed with a list of questions ready about how he does surgery & recovery etc. Most doctors don’t do both sides at once, it can be risky because of swelling, so I would think that would be unlikely. Let us know how things go!

Jules . Thank you very much I will ho armed and hoping the doctor will do my operation .
I’m even thinking about giving up work as the pain is horrendous …

Mr, Saunders was mentioned June of 2017, by Purplethings. I do not see Purplethings anymore but it was a good recommendation then. Good luck.

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Both sides at one time is not a good idea. Swelling and pain could make it very difficult to function. I would not risk it,knowing what I know after on intraoral followed by 2 external surgeries. I jokingly asked for both externals to be done at same time. Doctor said, no, of course.
I wish it were safe to do both.

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When you mention 2 Surgeries not safe do you mean the neck incision ones on each side or throat Surgery? thanks

Hi Aidan,

Neither version of ES surgery is as safe when done bilaterally all at once because there is tremendous swelling in the throat & a risk of the throat swelling enough to make breathing difficult w/o a breathing tube in place. Additionally, the pain of having both sides done would be pretty horrendous. It’s my opinion that the body actually heals faster from each individual surgery (even though it’s a bit more spread out) than it does from one “giant” surgery.

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Hi I was only asking about the surgery as I have ES on both sides. I hope to have my right side done first . Externally. As this is the more painful side I’m finding day to day the pain is getting worse.
Does any one wear a bite raising appliance on there teeth at night as I do, as I grind me teeth and helps the tension in my jaw I have at this time ?
Thank you for your help and comments x i will keep you all informed and try and do a diary day to day when I’ve had my operation.

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ok thanks Isaiah

Hi Angela,

i wear a nightguard or splint on my lower teeth at night as I’m a clencher but not a grinder. I’ve worn my jaw joints out from clenching but the splint makes a big difference in how much pressure I can put on my jaw joints when clenching now. I can’t remember how soon after my first or second ES surgeries I began using it again, but I think it was fairly soon since the surgery affected my throat/neck & not my mouth.

We’ll look forward to reading your post op diary. It’s always good for others who are planning to have surgery to know what to expect post op.

I find my BRA helps if I ever forget to wear it my pain is 5× more painful and my day is horrendous . I go through 2 or 3 a year. The plastic is very hard and should last so much longer. I feel I would have no teeth left if I did not use it.
I will try my best to fo a diary every day depends on how I feel but that’s my aim …

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Anash,neither approach should be on both dides at the same time. I had left side through the throat first. Recovery was long and I never felt completely better. 5.5 years later, I had left redone, through the neck. The recovery was easier. I was given IV steroids about 16 mg of decadron in total. That helped overcome any initial pain. Then the right 2 weeks ago through the neck.Same steroid, this time, I was released at 5 pm the same day after the last steroid dose of 4mg. I could have left earlier. They had removed the fluids and IV, just kept port in place. Very easy time,but one hitch,temporary facial paralysis which involves the eyelid as well as yhe cheek muscles. Hardest part is taping the eyelid shut with ointment in the eye to protect the eye from dryness and pain. Not driving and having difficulty finding things right in front of me,but other than a bit of first bite syndrome,just waiting for nerves to wake. Adjusting to the fact that it may take several months.
Bite guard for TMJ. After my external surgery on the left,I felt fine for 3 months. I thought my TMJ was gone. Nope, the trigeminal nerves must have been sleeping. When they decided to wake,my jaw hurt badly. I cannot take Nsaids or opioids, so I took Tylenol, Gabapentin and used heat and ice for a few days. I immediately put the guard in and wore it day and night until I calmed down. This time, I put it in the day after surgery. I recommend that you begin using it as soon as you feel you can tolerate it. I suspect that will be quite soon after external surgery, maybe longer after surgery through the mouth.
If it feels different, you may need an adjustment after you heal,but try to wait a minimum of six months, even better a year bc most of the healing is over in a year. I do not feel a need for an adjustment, but I needed a brand new guard made after my internal surgery 6 years ago. That time the styloid was up in my tonsil area and my bite changed once it was gone. Good luck,hope you fell better soon. Remember, it takes time to heal.

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Excuse the typos, I am working with one eye taped shut.

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I’m hoping to go through the neck outside. I can not open my mouth wide enough for operation on the inside. My dentist has trouble with my check up and also the hygienists has trouble too x x
I’m hoping it will be done sooner than later x
Thank you Emma x

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Hi Anash, I hope you get relief soon I am also in the UK, Southampton area. Do you know what requirements are used on which scans in the UK & do they have to use contrast in CT Scans? I am worried because a few years ago I had full Brain Spine

MRI but they used contrast I reacted very badly & not sure if it could have been from lying flat on the table or the contrast used. I could not stop shaking the entire process they said they were considering stopping the procedure I do not want to go through

this again. I am Allergic to so many things now also told never to take Morphine or penicillin again & I fear going for tests…I cannot even be around perfumes or cleaning

products now I react so badly…All the best to you God bless you

Hi Aidan,

Jules is in the UK & can answer this question for you. I expect she’ll pitch in soon with information.

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Hi I had a ct scan not sure which one I had. Before I had it the doctor thought I had stones in my salivary gland x
The doctor in Bristol is more inclined to do the operation orally x x

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When I saw Mr Axon, he requested a CT with contrast, because I had Intracranial Hypertension symptoms, which we believed were caused by vascular ES, so he wanted to confirm this. I don’t know what other consultants require, or if contrast is very often used.
I also had an MRI at the local hospital where I was diagnosed to rule out other conditions, plus a saliogram (?sp?!), as I had salivary gland pain & a suspected blocked duct at the same time as I was diagnosed.
Sorry I can’t be more helpful…

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