Hi all … I am 4 months Post intra oral surgery on the right. My symptoms were pain in the jaw, face and ear, numbness in the face, blue lips, dizzyness, weird laughing Tia’s, numb arms …amongst other random things.
Dr. Gupta in Hamilton knew instantly what it was and so while I waited for a CT scan to confirm, I had found out this could be seen on a pan x-ray from the dentist… So I called and got my last one from the year before and sure enough there they were!
Finally had the CT scan and one side was 6 cm and the other 7 cm… The right side which caused me the most symptoms had been growing into my throat and I could feel it with my finger which is what prompted me to get a referral to an ENT in the first place… He put me on a surgical wait list … From August 18 to Jan 19 I waited and was booked in … Yet the surgery was cancelled while I was there due to an emergency case… I was rebooked for the end of March due to a vacation we had planned …
The surgery itself was intense… It was done intra orally as this is the only way he prefers although had he needed to I was marked to have an incision externally yet it didn’t come to that.
The live he removed was wrapped in scar tissue and muscle and was one of the toughest he had to remove because of those factors… It was also the thickness of his finger tip … He removed what he could and I went home same day… The pain meds made me feel sick and I am a pretty natural person so I stopped taking them the next day…
The pain was unreal… There was a nerve in my jaw that was so irritated my whole face felt like it was being electrocuted when I drank water …most nights I woke up crying cause the pain was terrible … Finally I found a balance of Tylenol and advil schedule that alleviated the pain slightly…
The sight of the incision was gruesome and because it’s inside the mouth gets a white scab that eventually turns black and falls off - mmmmm lol …
Finally when I was able to eat apple sauce and anything acidic burned so so much … Even yogurt was brutal… My sister made soup that I managed to get down ( except the tomato based one due to acidity) … popsicles in the smallest bits worked because I wasn’t able to open my mouth much yet kept practicing so it didn’t stay like that ( the mind was taking over at this point and anything was possible lol ) …
One night I sneezed and fell back asleep only to wake up in the am with a long hangy blood clot down my throat - I imagine the sneeze ruptured some things in the night…
By day seven drinking water was so painful that the shooting pain in my face and jaw warented a call to the ent … They said give it a few more days and keep trying or go to emerg … Litterally that night I was able to drink pain free …
Over the next few weeks the pain came and went I lost 7 lbs lol … Took about 6 weeks total to feel back to my self again…
One weird after effect was my overbite was completely gone - at post op my ent said he has no idea why or how yet I can assure u the over bite is fully back four months later lol …
Now my left side is acting up and I have residual trouble swallowing - sometimes water comes out my nose ( more painful if it’s wine) and pushing food down is pretty tough… I am waiting for a barium swallow test and another CT scan yet in the meantime went to the dentist and had another pan xray and the bone on the left has gotten longer and oddly the bone on the right is still there minus the section he removed - which def alleviated all of my symptoms on that side … I imagine he wasn’t able to remove it all as it was so enveloped in scar and muscle tissue … I will ask at my fup … So that’s my story with this crazy disease and hope it helps anyone maybe wondering about intra oral surgery
Glad that some things are improving, sounds like you had a pretty rough time post-op…love yiur sense ogmf humour & positive attitude, glad you can still drink! 
…thank you for letting us know about your doctor, so few in Canada seem to know about ES or do surgery…
Sorry to hear your other side is playing up, unfortunately it often seems to happen. Hope that you don’t have to wait too long for surgery!
Hi Natashaliann,
Thank you for your great update! I’m so glad you’re doing well after the long wait for surgery then having to recover w/o Rx pain meds until you figured out an OTC regimen that worked.
Your story sounds scary especially how thick your styloid was & how “encumbered” by scar tissue & muscle. I’m not sure if you have read on here that ES surgery done intraorally gives limited access to the styloid so it can only be shortened not fully removed. That’s why you still see a remnant of your styloid after your first surgery. The external route allows for better access & more complete removal. We do have one member who wrote that her styloid was removed at the skull base & her stylohyoid ligament was also removed via intraoral surgery. Her surgeon had to make several incisions in her throat to access everything. I think her recovery was pretty miserable but she’s doing well now. That is the only case of intraoral surgery I know of where complete styloid removal has occurred.
Getting your left side done will make a BIG difference for you. I’m glad you’re doing the work toward taking care of that. Get on your surgeon’s schedule ASAP so you can start the clock ticking since it sounds like it will take some months for you to get in to see him.
Shalom Natashliann, I had my surgery back in 2004. I had both sides done at the same time through my mouth. I suffered for 17 yrs. without a proper diagnosis. I finally moved to Oklahoma from Texas. I went to Dr. Greg Krempl at the University of Oklahoma and he was the one who diagnosed me.
A week later I had the removal of my tonsils and Dr. R Layton Runkle did the surgery. I lost 30 lbs. because I could not eat for awhile. I am a diabetic so, healing took awhile. The first sip of water I drank was, Daisani and it burned all the way down because of the sodium in the water. I am not sure if it still the case??? My husband bought me an Aquafina and that went down smoothly. From then on, that was all the water I drank. This surgery is not for wimps…It was a hard surgery but, my life changed for the better. I was having shoulder pain, headaches, and I had bad stomach aches from the pain.
The only way to have a better life with this demon called, Eagle’s Syndrome is, have the styloids removed for good. I am so much happier and pain free.
Thank you all for your kind words ! I cannot wait to have the other side removed … The reason he’s going intra orally is because the scar tissue and muscle involvement it’s too dangerous to go externally - which if he’s not comfortable then I am not going to force it … Eek ! Thank you for sharing your experiences and I will keep up posted along this journey !
Natashaliann,
How are you doing now? Did you have your second surgery? I hope all is well & you’re getting back up to doing what you love.
HI there!
It has been a while… I actually have decided to hold off on the second side surgery for now as the pain is almost non existent… I usually get symptoms in the summer with the heat so we shall see what this year brings…
I was diagnosed with another rare condition … an aberrant right subclavian artery that passes in front of the trachea… so may need surgery for that… which is where I have redirected focus.
Hope all is well on your end!
Hope you can get some treatment for that soon, it sounds like that needs to be the priority…I’ll pray that you get that sorted.
I have that aberrant subclavian artery anomaly as well, was told it is not an issue to be addressed, just my “lucky fin” - Nemo. Hope that is the case for you as well! Best of luck 
Good call, Natashliann. It’s best to fight your battles one at a time. Deciding which one should take priority at a given moment can be hard, but it sounds like your situation is pretty clear.
Please keep us updated. We’re here for you always.