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Eagle Syndrome - Online Support Group

5 days past styloidectomy


#1

Hi there everyone,
I posed something somewhere , hummm not sure how to work this site.

Anyway 5 days past surgery doing well, some swelling and chewing issues, not bad .

I had an awesome surgical crew at THE VICTORIA GENERAL HOSPITAL IN HALIFAX NOVA SCOTIA.I WAS TOTALLY AT EASE, HUMMMM well they were digging in and around some very vital blood supply to my brain.

Nice to know there is 4.5 styloid in a lab somewhere, not in my neck pressing on my artory vein,and nerves of my spine…

All went well and I am happy to be on the other side of the styloidectomy.


#2

Have seen your other post- you should get a message via email every time anyone comments on it.
It’s so good isn’t it, when you get rid of one of those nasty bones…!
Hope you soon recover and get rid of some symptoms. It can take a long while for nerves to heal though to feel the full benefits.


#3

Thanks Jules.
Well this was the first day I got up and moving before noon since surgery. I am now realizing how much anxiety I have been carrying around.

I am doing some relaxation techniques and meditation. I believe this can help me heal mentally and physically.

I am having some numbness just below my jaw line. My tongue also flips when I say awwww. Does anyone else have this? Hoping that will clear up soon.

Eating is still overwhelming, but getting better. It is a little painful though.

Thanks for listening, Emery


#4

I had/ have numbness along my jaw and around my ear- one side is completely back to normal now (2 years post-op), the second side still has some numbness, but I’ll take that over pain any day!
There have been several members who’ve had tongue problems- it may be that the nerves are stretched/ irritated leaving weakness, but hopefully it’ll ease with time.
Lots of soups/ smoothies for you then?!
Take care!:bouquet:


#5

Hi Jules,
Thanks for the positive messages. I am taking your advice and taking it slow. Each day I am improving little by little.
Tell me what is first bit thing many people are talking about?
:hugs:


#6

First bite is a sudden pain around the parotid gland (cheek and ear area) you get when you have a mouthful of food. Here’s a definition:
'First bite syndrome is characterized as pain in the parotid (salivary gland) gland or lower jaw area (mandibular region) at the first bite and, subsequently improves with each bite. The cause is unclear but, may be related to nerve impairment from surgery or other conditions. '
It varies from mildly annoying to pretty painful, but not everyone gets it and generally it improves with time.


#7

Thanks for the info.
I definitely have this, and I have had it in the past, just thought it was part of the trigeminal neuralgia.

Well no wonder it is so exhausting to eat. It will get better I know this.

Only two weeks past surgery, I am improving everyday.
:slightly_smiling_face:


#8

I started getting “First Bite” Just the past few days. I’m almost 3 weeks Post Op. is this commen or do most that get it, get it right away?


#9

I can’t remember when I first got mine, I don’t think it was immediately because I wasn’t eating much to start with, but it has come and gone over the year post-op. Just when you think it’s gone, it comes back! But haven’t had it for a while now, thinking about it! Hope that yours soon goes, but I think most of us feel it’s a price worth paying for the Eagles pain to go. How’s the rest of your healing going?


#10

Oh yes!! I absolutely agree! First bite is nothing compared to ES. And it doesn’t happen every time. Besides I’ve had that sensation many times before in my life. It’s just that it now seems much more intense. But I’ll take it over ES Pain for sure!


#11

Emery, I hope you are doing well now! Do you have trigeminal neuralgia? I have just found out about having Eagles, have not yet even seen a surgeon. O am frightened that the surgery will exacerbate the neuralgia pain (TN and ON). The physiologic dentist who saw the calcified ligament and diagnosed me however says surgery for Eagle’s may actually be answer to gettng rid of or at least lessening the nerve pain. Any suggestions anyone? I’m in the US.


#12

Emery I hope I’m making sense! Wondering if the surgery for Eagle’s has made TN symptoms worse? I’m allergic to anti-seizure medications so only take pain meds and nerve blocks. Had an MVD 7 years ago but they found no compressions so the brain surgery made many things worse. Also have TMD.


#13

Having surgery is a difficult decision- quite often the only way to find out which symptoms are down to ES is to have surgery and see… I have ATN (the constant aching/ burning or boring rather than the electric shock pains) which was worsening before surgery. It has improved a bit, and certainly didn’t get any worse- I was starting to get numbness in my cheek & jaw as well, which has gone now, but I am still taking medication. (A low dose of Amitriptyline)
If the calcified ligaments are compressing the nerves then hopefully surgery will help as long as there’s not too much permanent damage done.
If you are thinking about surgery, there’s info & links to discussions so you can read about others’ experiences in the Newbies Guide section. But the best advice is to see an experienced doctor, & to make sure that they remove as much of the styloid process as possible, and any calcified ligaments, and to smooth off the end of the styloid. There’s an up to date list of doctors familiar with ES in the doctors info section too- there are a few in NC, but don’t have much info on them I’m afraid.


#14

Thank you so much Jules. Yes that will be the biggest challenge, finding a good doctor. The doctor who diagnosed me is in Las Vegas and isn’t a surgeon, he is a physiologic dentist, teaches at a school there.

Yes I saw that two of the doctors were at Duke. That is where I had the MVD brain surgery, unnecessary, when all this started in 2010 and it was truly an awful experience. The staff at the hospital was awful and even ICU was extremely dirty.

So I’m thinking that when I see my pain management doctor I will ask for a referral to the doctor in private practice in Monroe. That should be two hours or less from me.

My pain doctor is in VA near where we used to live. Have you heard anything at all about the doctor at UVa in Charlottesville Virginia? My doctor often refers people to UVA for trigeminal neuralgia and spinal surgeries.

Melanie


#15

Hi Mellie Good luck finding a Doctor that has experience with Eagle syndrome. I was just recently diagnosed with Eagle syndrome. I will be having my surgery on January 22 at the Cleveland Clinic. The cleveland Clinic has several doctors that work with Eagle Syndrome. Maybe you should give them a call if you wouldnt mind traveling.