Good evening everyone! I live in the Charleston area and am scheduled for bi-lateral intra oral with Dr. Lentsch on Friday. I am extremely nervous. Can anyone share their experience with having both removed at the same time, intra oral. My ENT seems to think it will be less painful than an adult tonsillectomy. Thanks everyone. God bless and be well
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There are several discussions about what to expect with intra-oral surgery, but not many have had bilateral…it will be painful, & although I’ve not had intra-oral myself, from what I’ve read on here about members’ experiences, I would respectfully disagree with your doctor’s view about pain! It certainly pays to be prepared…Praying for a successful surgery for you, let us know how you get on when you’re able 
4 days post op, intra-oral, stitches coming out already - General - Living with Eagle
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My Dr said the same thing, and it may be true, depending on your idea of pain. For Tonsillectomy they leave the wound exposed which can add to the pain. I felt like the dangling, pulling stitches added to my pain. Lol. But I haven’t had terrible pain! It hurts, but nothing I can’t handle. Its just a lot going on. My jaw is tender to touch, but I rarely touch it so that’s not terrible. I have had high heart rate and some dizziness but that’s my POTS acting up. I lost 10 lbs this week, which should have been exciting but was a little concerning. Swallowing isn’t great, but sometimes I just put a bath towel on my pillow and drool instead. I learned that years ago with wisdom teeth extraction. The truth is, maybe your surgeon will do something different since it’s bilateral. I would ask them about it. I enjoy laying on my good side, and I’m not sure how I’d sleep if I didn’t have that option? That might be a good question.
I will be honest, I wish I had been more suspicious and asked more questions of the doctor. I might have been more prepared and less anxious.
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@annaleighm - If you haven’t done so, get yourself a wedge pillow to help you sleep upright for a few days/weeks post op as that will help reduce swelling in your throat & neck. A 30º incline has been suggested by some doctors. It’s hard to sleep that way at first but you’ll get used to it & it really does help. An addition to that could be a V or U shaped pillow to help keep you from rolling onto one side or the other for a few days.
Ice chips, frozen juice ice cubes, popsicles, etc. can all help reduce throat pain. Stay away from dairy for a little while as that can cause excess mucous in your throat which you don’t need to be dealing with. Nut milks can substitute for cow’s milk. I ran my meals through a blender - meat veggies, salad w/ some broth, water, or almond milk - all together. It looked awful but tasted great!
As @Jules said, please let us know how you’re doing when you feel up to it. I’ve got your surgery on my calendar & will pray for you that day.
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I would caution against both sides being done. My surgeon said only do one because of the swelling and pain. He was right, for me there was a lot of swelling and pain. So much so I will do external on my other side.
It is such a hard decision.
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Thank you for sharing your experience, @Katflorida. Do you have a date in mind that you might have your second styloidectomy? Will you see the same doctor or do you need to change doctors to get the external approach?
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Just here with an update. My doctor successfully did the bi lateral intra oral removal. The pain was manageable but swelling was rough. I only took the pain medication for less than 48 hours.
The swelling for me was into my pallet so everything wanted to come out of my nose. It took major concentration. You want to keep plenty of ice packs in stock to switch out regularly. It helped tremendously. Consuming warm liquids was much better on the throat than cold but popsicles are what kept me alive. I didn’t eat anything of substance for 8-9 days. The issue there was that, while I could chew if I tried, I lost of most of the movement in my jaw from swelling and lost all strength in my lower jaw from them holding my mouth open for surgery. So that’s a thought to keep in mind. Also, the tool they use to keep your tongue out of the way can burn in the depths, along with both styloids! My tongue was the most swollen part of me, along with a gnarly sore from either my teeth or the tool. Dr. Lentsch didn’t save them or grab a picture but that’s ok… I’m unaware of the final length but he said they were very misshapen and rather fascinating and gangly to see. He said from the beginning he wasn’t sure I’d find relief but that I was a candidate for the surgery, it was just ultimately my decision. I’m so thankful I did it. The trigeminal neuralgia is gone. I didn’t know they nicknamed that the Suicide Disease. It makes sense. The burning skin sensation on my neck is gone. The impingement syndrome has subsided. The ear pain hasn’t come back. I still have ringing, I fear I always will. I’ve come to terms with that. No trouble sleeping anymore. I’ve had no vertigo episodes. I’m sure I’ll remember more to share and will be back with an update. I can’t thank this organization and group of people enough. I wouldn’t be able to say I found it if not for you. The ent I saw now knows to request the ct scans in 3D. We’re changing things! God bless y’all!
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I’m so pleased for you that the surgery has helped your symptoms, especially the TN! Brilliant to hear! Interesting that Dr Lentsch thought they were fascinating, not really a claim to fame you want though!
You’re very brave doing a bilateral surgery intra-orally, so great that you’re doing well
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Thank you for coming back to share how you’re doing @annaleighm! What a great report especially when you’re less than two months out from surgery. It sounds like Dr. Lentsch did a great job! More recently we’ve had members who’ve had intraoral surgeries w/ fairly quick recoveries & really good outcomes. Sometimes in the past that wasn’t the story. It seems like the intraoral approach may be evolving into a style of ES surgery that is more acceptable to us as we’ve favored the transcervical (through the neck) approach because of the better visibility of nerves/soft tissues, vascular tissues, & the styloid.
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I’ll be honest beforehand I felt like intraoral would be a big regret for me. I did have several weeks of sore throat. It took quite some time for the stitches to dissolve also. But he really like this approach because he swears it’s a quicker recovery and you have a less likely chance of injury to facial nerves, nicking something important. So I trusted him.
I also wanted to share. Dr Ryan Osborne in CA has done so many studies showing a correlation to those with ES and Ehlers Danlos. I am in physical therapy for my spine bulging to the left basically top to bottom. For a 35 year old in rather good health, it’s been wild. But the PT is certain I have Hypermobile ED and I await my appointment with my new Rheumatologist office.
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Really interesting, has he published any research do you know?
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@annaleighm - Based on the increasing number of members we have who’ve been diagnosed w/ hEDS & subsequently ES (the opposite of you), I agree w/ Dr. Osborne’s findings. I’m glad he’s noticed a correlation between the two in his studies.
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Hello. I had the awl process removed on the right completely at the base of the skull with intraoral access.3 weeks have passed after the operation, I have pinched veins and possibly nerves between C1 and the awl processes, after the operation I felt relief, but after a while some symptoms return, I don’t know what is related to, maybe sealing and adhesions in the operation area. or another problem. After surgery, my tongue is numb, and it’s very hard to swallow food, and I can’t taste the same. It’s because the glopharyngeal nerve was disturbed. I wanted to ask if you’ve encountered such problems, and how soon do they pass?
It is common to have symptoms come and go after surgery, it’s often an up & down recovery! Sometimes it’s because you’ve overdone things & irritated nerves again, I don’t know if you might have done that? I would think it’s a bit early for you to be getting adhesions after surgery… The hypoglossal nerve can get irritated during surgery which can cause tongue weakness, hopefully that will improve soon. @Isaiah_40_31 I’m sure will let you know her experience with this.
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@Valeriy - It can take many months for nerves to heal after ES surgery as nerve recovery is very slow. As @Jules said, symptoms will go away then come back then go away again repeatedly for several months but they usually finally go away permanently or at least are reduced enough to allow a normal life.
I had both my hypoglossal & glossopharyngeal nerves irritated during my first ES surgery. Half of my tongue was paraylized for 6 months, & it really took 9 months before it was back to normal. This made eating & speaking clearly quite difficult. My tongue wasn’t numb, I could feel it, but if food got over to the right (paralyzed side) when I was eating, I would have to use my finger or a utensil to move it to the left side as it wouldn’t move by itself so I could chew & swallow it. I also had some trouble swallowing food & liquids at first, but that got easier after several weeks. I didn’t lose my sense of taste. It’s odd that yours is gone since that is often a function of the sense of smell. Can you smell the scent of what you’re eating, but just not taste it?
If you had nerve monitoring during surgery, that could also have affected your tongue as the nerve monitors in the mouth are fairly invasive & could cause nerve irritation. I do expect your numb tongue will regain sensation, but it may take another few weeks or a month or so.
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