Surgery next month

General
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Hello all!
I must apologise for not coming back to give news since March but it has been very very hectic… but i read up on here every day! my symptoms are becoming crazy… the left side is always as painful and the right side: i feel my heartbeat in my ear and feel like fainting just walking up a few stairs… and my ear seems blocked and i can hear my voice echo in my head :exploding_head:
I have found an ENT not too far from home who diagnosed my ES in May this year and wanted to wait before suggesting an operation… he asked me to do some more PT, osteo, yoga, meditation and anything else that could maybe help me out :crazy_face: i tried all of that and much much more and surprise, surprise… nothing worked :rofl: so i went back this week to see him and he is willing to operate! He has done 15 ES surgeries and he does the surgery internally. He checked my throat to see if he could feel a bone or the calcification but he says he cannot feel anything… which he says is quite strange as that is generally how he makes sure it is ES… now this is worrying me and i have read somewhere on this forum (but can’t find the discussion anymore) that you don’t necessarily have to have a bone sticking in the throat do you? If I recall correctly, the foreign body sensation can also be due to the calcification pushing on a nerve, right?
The ENT said he is most probs the only one in CH to operate ES, as he has never heard of any other ENTs dealing with ES patients…

I am happy to finally be taken seriously but on the other hand I am so scared about the surgery… the last op i had was to take my tonsils out 30 years ago :expressionless: and i am worried, what if he operates and it doesn’t work and it wasnt ES to begin with? I just want to feel normal again :disappointed_relieved: am i doing the right thing?

Not sure all of the above is very clear, i think i just need some support from you guys who know exactly what i am going thru and feeling right now… thanks a million :slight_smile:

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Hi Bubble!
I can understand your worries about having surgery, it’s not something you undertake lightly! Unfortunately no surgeon will guarantee that the surgery will cure your symptoms, & nor can we, nor can anyone say that they’re definitely all down to ES. You have to go into surgery with a ‘lets hope it improves symptoms & quality of life’ attitude, & be prepared that healing will take time, there may not be instant results.
All we can say is that your symptoms can be down to ES, & the bone can’t always be felt, so don’t let that concern you. You’re right that it can be a nerve sensation of something in the throat rather than the actual styloid poking into it. If your symptoms are worsening & it does sound as if you’re getting vascular symptoms too, then surgery is the only cure. I left surgery until I started getting vascular symptoms because I was concerned about having the operation; it helped & I feel so much better, I think often the vascular symptoms seem to get resolved quickly after surgery & makes a huge difference.
You don’t mention the surgeon’s name, but we have one on our list: Dr Adrian Schubert, University HMO, Bern. If you’re concerned about your doctor & want a 2nd opinion then you could try him? But if you’re confident with the doctor you’ve seen, then I hope that reading up on others’ experiences on here will reassure you that you’re doing the right thing!
Let us know when you get a date!

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Hi Bubble,

Good job following your doctor’s instructions. I am sorry though that nothing helped relieve your symptoms, but perhaps that is a good thing since it now forces your doctor to pursue a more aggressive treatment i.e. surgery.

Not everyone’s elongated styloids can be felt in their throats. The angle the styloid(s) are growing determines palpability or not. If yours are growing very straight down or if your ES is coming from calcified s-h ligaments & not elongated styloids then it would make sense that he could not feel them.

Since your surgeon is doing intraoral surgery, ask him to remove your styloid(s) as close to the skull base as possible & smooth the cut ends once he’s shortened it (them). Also ask if he can remove your stylohyoid ligament(s) if they are calcified at all. There is a surgeon in the US who did intraoral surgery on one of our members & was able to totally remove the styloids to the skull base & the stylohyoid ligaments. He had to make several incisions on each side of the throat to accomplish that. I don’t think that’s a common practice in intraoral ES surgery, but it’s worth asking about.

I’m glad you’re progressing toward surgery & will pray that your symptoms leave w/ the styloid although, as Jules noted, healing can take awhile.

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Hi Bubble,
As others have said, there are never promises about surgical outcome, but a surgeon who has done 15 (hopefully with good outcomes – that is worth asking) is pretty experienced in what is a very rare disorder. The foreign body sensation is a classic ES symptom that was described even in the earliest research studies. My styloid could not be felt prior to surgery either and I had similar vascular problems to yours, which went away right after the procedure. I definitely understand being anxious. Cling to the knowledge that they will give you great pre-op drugs that will give you amnesia for most of what happens:)

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Good day to everyone! Many thanks for your kind words, most appreciated :purple_heart:
I had surgery on Monday morning, 14th October. Onelessstyloid, you were right, the pre-op drugs were the BEST :joy: i was gone even before the anesthesia :smile: surgery went well but i must have bitten my tongue real bad as its super painful and numb. I saw the doctor as i left the recovery room, i wasn’t at all back to myself when i thought i heard him say that he couldn’t find any bone or calcification. What the what?! Then i went back to sleep… i left the hospital the next day, the nurses were adorable, everyone was so nice. The doctor visited me again before i left and he actually did say what he said. He found no bone or calcification… but he still resected the ligament. I am totally lost now, has anyone ever had ES without a bone or calcification? This sounds completely stupid, i know… its hard to say if its worked as its so sore in my mouth… but i havent had pain in my arm, shoulder and left side for the last 2 days… And i cant say if the foreign body sensation is gone or not as the stitches are in the exact same place… i know this is going to take a while to heal and i am taking things very slow. But i really do feel silly… did i just get surgery done for nothing? I will be seeing my doc in 2 weeks to see how things evolve.

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That is bizarre…do you know how long your styloid processes were on the CT?
What’s worrying is that if your styloids aren’t that long but were causing you symptoms because of their angle or width then the surgery may not help…although if the arm & shoulder pain is gone then that’s good! Hopefully when the stitches heal & swelling goes down then you’ll feel more improvements, & will know before the follow up appt., although 2 weeks is still quite early.
Hope that you do soon feel better , gentle hugs :hugs::bouquet::pray:

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Hi Bubble,

It’s curious that your doctor would do your surgery based on what was seen on a CT scan & then “not find anything” (which is essentially what he told you). Why would he offer to operate if the CT didn’t show anything? It might be that there is/was something there but maybe not what he expected to find? As Jules noted, perhaps the styloids were thick or pointed or curved instead of elongated. If that is the case, he should still have considered removing them. I also agree that if only removing the ligament has helped you some then perhaps there was truly something going on that wasn’t obvious but has made a difference now that the ligament is disconnected from the styloid &/or hyoid bone.