Just so rotten, but at least you’ve got a call with the consultant, I hope that they listen to you…
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Thanks @Isaiah_40_31 and @Jules - not holding out any hopes but at least each day is a day closer to getting it sorted
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Hi - hope you’re well. Is it possible for something in my jaw (left side under tongue) to be calcifying? I’ve been getting all kinds of problems in that area and if I probe I can feel something hard almost like a bone, if I follow it back it appears to go back to the same area as the ES on that side.
Not sure if this is in the area you’re feeling, but we’ve had a few members diagnosed with Pterygoid hamulus issues, here’s a link:
Pterygoid hamulus - Structure, Location, Function, Diagram (anatomy.co.uk)
And here’s a discussion about other bony growths in the mouth, it seems to be quite common with ES to get over calcification/ bone spurs in other areas:
Eagle Syndrome as well as other bone abnormalities - General / Eagle Syndrome Stories - Living with Eagle
It could otherwise be the stylo-mandibular ligament calcifying as well, I think some members have had this although not very common.
Thanks Jules, I’m not sure its either of those things but looking at the structure of the mouth from those diagrams I think it might be either the dygastricus, geniohyoid or mylohyoid. Its a hard tube like structure that runs along the base of the mandible from the styloid area to the front of my jaw and each of those suprahyoid muscles feel like possible culprits.
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@Mafre - Another option is mandibular tori. I have this bilaterally. It’s along my jaw line under my tongue. If I eat bread w/ a hard crust, it can abrade the skin on my tori & make them feel raw.
“A torus mandibularis is a noncancerous, bony growth that forms on your lower jaw and sits under your tongue. You may have one growth (torus) or several (tori). They can develop on one side or both sides of your mouth. Mandibular tori aren’t dangerous, but they can be uncomfortable and even painful in some instances. If these bony growths interfere with your oral function or quality of life, talk to your dentist. They can recommend appropriate treatment.” Mandibular Tori: Causes, Symptoms & Removal.
You can Google images of dental tori to see if what you have in your mouth is similar.
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Thanks for suggesting this. That looks uncomfortable and some of the symptoms are the same but I don’t think it’s that either as what I’m experiencing isn’t fixed to the jaw. I’m wondering if the ES is causing one of the tendons under my tongue to tighten and feel harder and that’s what’s inflaming the floor of my mouth too. I’m going to ring the hospital again today to try and update them.
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It could well be, I hope that the hospital listen to you… 
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So I now have a date set for the operation within the next month 
Pre-op appointment next week. Do you have any suggestions for questions I should be asking? Or recommendations for preparing for the surgery and recovery?
Fantastic news that you have a date 
There’s info in the Newbies Guide Section about surgery, & links to some discussions about what to expect post-op, plus if you use that to search the past discussions it’ll come up with lots! Here’s a link to that:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Here’s a suggested list of questions to ask (although I guess right now even if some of their answers weren’t great you’d probably still want to have the surgery, you’ve waited for so long?)
- How many ES surgeries have they done and what was the success rate?
- Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
- You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
- If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
- There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
- Will it be a day case surgery or will you need to stay in?
- Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
- Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
- What painkillers will be prescribed afterwards.
- Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
We have a list of suggestions one of our members drew up for what to get ready for surgery:
Surgery shopping list - General - Living with Eagle
I would check at your pre-op about any medications you’re on & whether you should stop them and how soon before surgery- they should go through that but it doesn’t always happen & you don’t want to be refused surgery on the day! I took a B group Vitamin supplement after surgery as well, not sure if it did help, but it’s supposed to promote nerve healing…
Let us know a definite date & we’ll be praying for you!
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HIP HIP HOORAY! So glad you have a surgery date, @Mafre!! I bet you’re relieved!
@Jules did a stupendous job answering your questions. I have nothing to add. I expect you’ve read the info about getting a wedge pillow to keep your head elevated while sleeping or at rest post op and several gel ice packs to help keep swelling down.
Yes, please do let us know the surgery date. 
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Thank you for this info @Jules and @Isaiah_40_31.
I’ll read through the info in more detail over the next few days and add the shopping list to my basket.
The surgery will be intraoral as that’s been agreed already. As you mentioned, it’s unlikely that anything they say will deter me from surgery at this point so it’s a case of making sure I’m equipped with the right questions and prepared for surgery and recovery. Its 7 years since being diagnosed with ES and having one side removed can’t come soon enough. I don’t want to be specific on dates, but I will have had the surgery by the beginning of August so will keep you updated with op progress.
Although, I don’t know you irl, you have both had a huge positive impact on my life with ES and I really appreciate your support and advice throughout this journey.
Thank you.
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Thank you for your reply, @Mafre. I’m glad we’ve been helpful & encouraging for you. That’s why we do this! Others were here for us during our times of need.
We’ll still pray for you even w/o a specific date. Just glad to know the surgery is coming up soon.
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Such a long time waiting for you…I’m glad that the site’s been helpful, and will pray for a successful surgery
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@Isaiah_40_31 @Jules Surgery went well earlier this week. I became very nervous leading up to it but was reassured by surgeon. Have had instant relief from styloid no longer being there. Still sore from operation but it hasn’t been anywhere near as painful as I expected. Mainly just very tired. Thanks for all your advice leading up to it.
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That’s great news, so pleased it’s done! Make sure you take it easy now & don’t overdo things…
@Mafre - YIPPEE! I’m so glad to know you’ve already gotten relief from symptoms! Expect some ups & downs w/ recovery but know that recovery will end with an upswing. I hope your surgery pain subsides soon!
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