Any intraoral success stories?

Hi everyone!
This is my first post but I enjoy reading this site frequently. Long story short, I was diagnosed with ES by a dentist based on symptoms and x-Ray. Ct later confirmed it. I’ve bounced around among several ENTs until I finally found one who understood ES and was willing to do the surgery.
The catch? He wants to do this intraoral. From everything I’ve read on here, the recovery is awful and it’s not always effective. He has done a few of these (intraoral)so he’s comfortable with it.
My questions for all of you: does anyone have a POSITIVE experience with the intraoral surgery? Should I keep looking for someone who will do this the external way? My ES pain is never severe, but it’s a constant, nagging, ache that I would like to get rid of. I want to decide if this surgery will be worth it or not.
Thank you!

Welcome home!

This is kind of "home" to us.

I had my two styloids removed externally. My surgeon won't even consider it because of the risk of infection. You will have to stay away from solids for quite a while. My recovery has been a piece of cake. Maybe you can find a surgeon familiar with ES close to you from Emma's list. That is how I found mine. Bless her heart, she is a life savior.

Don't get discouraged!

Yes-I had my left styloid removed internally in sept. The surgery went well, recovery was painfull and lasted a few weeks. I had my right one removed in 1990 through the neck-that was great and recovery was quick.

The reasons I was given for external then was: could get more of it, less chance of infection.

down side-scar--It was a beverly hills doctor so vanity was a factor appartently-I didn't care get all of it.

I had 2 screwed up attempts to get the left one externally in 2002 and 2003-not screwed up because they were external-screwed up because the doctors sucked. One surgeon one ENT.

My 2013 doctor (A skull base/reconstructive surgeon) did not want to do it externally because of the amount of scar tissue I had built up in the area so he went through the month and it was successful.

My only recommendation is to skip the ENT unless you have a sinus or ear infection and find a surgeon familiar with ES. And have it done externally. Unless you have extenuating circumstances like I had. Even a cedars ENT recommended me to surgeons to do it.

I had mine both done externally by Dr. Bradley Simmons in Canandaigua, NY. I drove the 6 hours to him. He didn't want to work blindly by doing it intraoral. Mine especially were really pressing on my carotid arteries. I think there would be a big risk of tearing that if it is connected at all and how would you know through your mouth? The scars are not very visible at all. I highly recommend him and he is set up for doing out of town people. Good luck.

I was told that internal will recover like an adult tonsillectomy-then I was told by a friend who had his tonsils out at 35 that it was awful.

I didn't like the extreme pain upon swallowing, breathing, coughing, but given my circumstances I was willing to have it done internally-even with what I'd been told 24 years ago. My current doctor and a doctor I use as a consultant in Colorado both told me that with my scar tissue from the 2 previous "surgeries" there was no way of knowing how the scarring had adhered to blood vessels and other tissue in my jaw area--so bypassing it all and going through mouth was my best chance for a safe surgery--this surgeon also understood that he was going to remove all of it. No opinions necessary--just take it all out he said. It hurt longer than external but no infection no bleeding and no bone-I can't feel it with my finger anymore just like the right side so either way can result in in a positive outcome. It's more the surgeon than the method. The scar tissue is softening and my symptoms are reducing all the time-I have a follow-up in April. He did tell me that having it in there for 15 years might have done permanent damage to the nerves and ear structures so time will tell. There is a member here going to him this week. So if you are LA near I've recommended him highly.

Also, not to put too much of a point on it--any doctor can screw up. There are no guarantees just make sure they know to remove all of it not some little bit and then tell you if it still bothers you we can remove more--that was my ENT in 2003. I asked him if that is the medical equivalent of measure once cut twice--another failure. If you want to know who to avoid around here I'll tell you personally.

Good luck and don't wait--I feel since my right side was removed completely in 1990 after about 1 1/2 years of symptoms was why I had no symptoms after the surgery. The left side in there for 15 years of symptoms and 2 butchers masquerading as doctors-destroyed a similar left side resolution but it is so much better than prior to surgery and there is no more to take out. So I have all I can to heal.

Thank you all for the advice! It’s great to have a community out there that understands.

I had my left and right side done on the same day intraorally and my tonsils out. I was sore for a week. But it was mostly tonsil related.. After 2 weeks I was back to work.

I do alot of clenching so I'm still sore sometimes, but other than that. I'm perfect!

Thanks, Kathy. That is really encouraging to hear! Mine will be intraoral with both tonsils out, but only the left styloid as that’s what is causing me problems. I’ve heard horror stories about having a tonsillectomy as an adult, but I also don’t want to deal with this eagle syndrome, forever, either!

Kathy said:

I had my left and right side done on the same day intraorally and my tonsils out. I was sore for a week. But it was mostly tonsil related.. After 2 weeks I was back to work.

I do alot of clenching so I'm still sore sometimes, but other than that. I'm perfect!

I had to sleep on my back for a while, stay up on the pain meds. Honestly the worse pain was the tonsils. Good luck!

I was supposed to have my tonsil out in addition to my left styloid. The doctor got me all set for more pain but was able to remove my styloid back past the ear up towards the skull but was able to leave the tonsil. That was a relief. Unless you need your tonsils out-your doctor can push then aside as my doctor said. but that's all I know.

Good luck.