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Eagle Syndrome - Online Support Group

Surgery tomorrow 😬

#1

I will be having external surgery on the right side tomorrow. Does anyone know an approximate guess to how long the surgery takes? My sister lives out of town and she is just trying to see if she needs to plan on staying another night instead of trying to make it home after the surgery. I know every surgeon is different but I figured getting an average timeframe would be better than nothing. :woman_shrugging:t2:

#2

Mine took about 3 hours, but as you say different surgeons operate differently…
Hope that all goes well & that you heal quickly! God bless, I’ll be praying for you…

#3

Mine took approx. 3 hours also, but mine was bilateral calcified both sides taken in that one surgery. Was outpatient, there all day.

#4

Forgot to mention mine was internal through my mouth. 4 months post op now and still healing.

#5

So glad you are having your surgery Dysonsmom! Praying all goes well.

#6

Thanks so much y’all!

#7

Hi Jwise219, Who was your surgeon?

#8

Sending prayers your way Dyson’smom​:heart::pray:

#9

Hi Overcomer1, my surgeon was Eric Lentsch in Charleston, SC at MUSC. He’s been doing Eagle Syndrome surgeries for 26 years. Fantastic doc. I was leary at first because I had read that if it wasn’t an external surgery it would grow back. He has assured me that with the way he did it, he rounds the edges, cuts doesn’t break off the bones. He took both sides all the way back to the original ligaments you are born with. He has never had a regrowth in all of his surgeries and only a couple of patients whose symptoms didn’t go away after surgery (meaning it wasn’t Eagles Syndrome). Mine were both calcified from the skull base to the hyoid bone (sling). Excessively long. He made multiple incisions in my mouth (throat, behind each lower back tooth) in order to remove all the way to ligaments. I have had a fairly easy recovery, but long. My symptoms were gone immediately. Ear pain, facial nerve pain, headaches, pain in my neck, sore throat, pain when yawning, hoarse, and the list is endless. Now all I am dealing with is the healing process. Occasional pain in my jaw if I talk or chew too much. Tired. He told me to count on a year before total healing. So I try to take it easy as much as possible. I’m almost 5 months post op. Surgery was last Dec 4th. I would highly recommend this doctor. I did see one in Gainesville Florida at UF Shands first, he wanted to do external only. My gut said no, there had to be a better way. So far so good. I suffered for 7 years before I was accidentally diagnosed by a dentist.

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#10

Glad that surgery has been successful for you!

#11

Thanks Jules!! Unbelievable. He gave me back my life. I just turned 59 years old last week, I have spent almost my entire 50’s trying to find out what was wrong with me. Mayo and multiple other hospitals. On disability. Nothing but a nightmare as all on here have experienced. I just felt calm when I talked to Dr Lentsch. He was so confident and matter of fact and made me feel the same way. I figured I had nothing to lose at this point, just wanted relief. I’m now able to fully function in my life like this never was. It’s amazing. I am hoping and praying by year end I am completely back to my old self. Have alot of catching up to do.

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#12

My dentist does a panoramic CT scan on me once a month. No regrowth. No sprouts. Nothing. The pics are amazing. He did a really clean, nice job.

#13

Jwise219, Thank - You so much for sharing your experience! That’s excellent news and glad to hear you are getting your life back. I understand fully about just getting properly diagnosed and the importance of finding the right Doctor! :heart:

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#14

Overcomer1 - It was a horrifying thing when first diagnosed. I live in Florida so the hunt was on for a good doctor. Not many around with experience with Eagles Syndrome. Then when you do go to one and he tells you this is your option, wow!! I was diagnosed last August, surgery was in December only because I backed out on the external surgery in Gainesville that was scheduled for October. I was experiencing a lot of mini strokes, they were concerned I would have a big one if not taken care of quickly. I agree. All has turned out well so far. I actually sleep all night now without pain waking me up. Wonderful! It’s great to read on here how many are having successful surgeries and finding relief.

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#15

jwise219 - Thank you for sharing the scoop about your surgery! I’m glad to read new info about doing intraoral surgery that I didn’t previously know & that is by using multiple throat incisions a surgeon can access more of the styloid &/or a calicfied s-h ligament. I’m glad to know there are doctors that do intraoral surgery that go beyond doing the bare minimum. External surgery also requires 6-12 months for recovery of nerves & vascular tissues that were affected by ES so the healing timeframe is similar. A good surgeon leaves barely a trace of his work after external surgery. I had both of my ES surgeries at age 58, & my scars are basically invisible now.

So glad you’ve had good results so far. Hoping that healing continues to restoration of your old self!

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#16

Dysosnsmom,

My surgery took about 2 hrs on the first side & 1.5 hrs on the second. Both were done outpatient & I went home 5-6 hrs after my arrival at the surgery center.

I think it would be wise for your sister to stay for one night if there are no other adults around to help you post op. My sister came from out of town & stayed for 4 days so my husband could go to work & not worry about me. I was very thankful to have her there.

I’ll be praying for you tomorrow!

#17

Hi Isaiah! Dr Lentsch also does external, but only when he deems necessary. He said the location of my bones was perfect for extracting intraorally the way he did. I did have external bruising and swelling on my neck from the surgery. Now my neck is back to normal like it was before I ever experienced Eagles. The Dr. in Gainesville, was going to do just my left side external, also remove my salivary gland and multiple lymph nodes. Told me that was the only way to get the bones out as they were that large. He was also very young and had only done a few of these surgeries. Once the bones were removed all of my lymph issues gone, no more mini strokes. My mind is so clear now. My want to is back. NO anxiety. I honestly feel like I just woke up from a coma. I thank God everyday for sending me to the right doc for my situation. He was truly a God send.

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#18

Dr Lentsch actually made one incision on each side of my throat, then 2 more, one behind each lower back tooth. He was able to access everything but the original ligament, which he doesn’t like to remove. The longest part of my healing was the eating. Almost impossible for a while. Just very soft food. Well worth whatever it took.

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#19

Jwise219, Sounds like you had a great surgeon! It’s good to hear the success stories of this surgery! Thanks again for sharing and I’m so glad you are basically symptom free! Wish you the best❤️

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#20

Hi there! My surgery was right at 8:30 a.m. and I woke up at 11:00. Was in the car with my husband by noon :+1:. Excited for you! Wake up and say “let’s do this”!

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