Thank you for this info. For some reason I thought you were located in Canada. I have been doing consults with some specialists in California, one is a PT that specializes in the ENVEST program for TOS and the other is Dr Osborne for ES (Head and Neck Institute). He confirmed my ES by reviewing the CT. I had a TOS MRI with Dr Werden which evaluated nerves … he is also located in California. The problem for me is that I will unlikely be able to pay out of pocket for surgical procedures in the USA, however I am looking into funding options! Canadians get the runaround for rare conditions and unfortunately have to look elsewhere for surgery.
Hmmm. I wonder have you ever checked into buying health insurance for use in the US that would pay for surgery? There has got to be companies that you can purchase international health insurance with. Whether it is affordable or not is a question. Does you canadian health insurance have any travel benefits? Just a thought.
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hello
My experience is pain under my jaw, this place like epicenter of my pain and then it echoing down my neck, sometimes my shoulder. Inside my throat and sometimes ear. My cheek on this side also got pain with the time and spasms. A lot of spasm I do not really know anymore the normal relaxed position of my mouth as there is a spasm on my cheek as well as on the tongue. It’s non stop for the last almost a year
Ther is a burning sensation as well in all the area.and weird feelings in the mouth that I cannot describe. Like a metal taste, only on one side .
I feel better in the morning for the first half hour and then the pain start slowly to appear. I. The evening it’s the worst.
Getting ready for my surgery
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Thank you Natasha. Those symptoms sound familiar, along with my TOS symptoms too. Which country are you in? And do you mind sharing which surgeon is doing the procedure?
I am having a very very difficult time finding someone in Canada that does this surgery. My TOS can’t be “fixed” without proper posture changes, and I believe ES is making this impossible.
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I’m in Middle East region. My doctor is dentist.
He never saw a case of ES before, but he took time to do his research, and seeing how I suffer he agreed to do the surgery. In in the mouth with local Anastasia. I wanted my surgery to be from the neck, but no other doctor would agreed.
So I said to myself it’s kind a destiny to make it with him in a way that I did not want. But now i agreed on all the terms, even that if he do not find it he will just close the incision up.
He did a lot of research and he said anyway it’s the best way , the safest.
My steroid anyway not behind the tonsils, it’s at the root of my tongue, under it. So the way he proposes looks reasonable for my case.
I trust him, he will do his best, even he never did it before.
Good luck to you with finding the doctor. It’s not easy I visited around 12 doctors of different specialties to find one that agreed to help. But do not give up
I hope your surgery goes well; a bit nervy with someone who’s not done it before but glad he’s done lots of research…have you got a date? Will pray for you 
Thank you Jules! It’s around 12 of December. In one week. I will se him on 8 of december to set up the date
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Hi @outdoorgirl
Just wondering how you are doing? Is your POTS still improved since the styloidectomy? Hope you are dong very well!
Hi! I would say my pots is 20% improved. I have 5 health issues that can cause or contribute to POTS so I am happy to have a 20% improvement. I need to have the other side done in 2021 and if that gives me another 20% improvement, I will be thrilled!
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Yes, we are complicated creatures aren’t we?! That is great it has helped. Hopefully 2021’s next styloidectomy will bring even more good for you! Cheers, be well!
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So glad that you’ve seen some improvement! Let us know when you have a surgery date…
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hi snapple. wast he second surgery a success? I am curious - where is the sensation of something being stuck in throat? i feel this too, just curious where others experience this. is it middle of throat? or closer to jaw?
HI Bmc,
Sorry so long in responding. Ive been out of town and started a new job. I had my 2nd surgery on Dec 7th so Im about 4 months out. This is the side I had the “bone in my throat” feeling and the source of the shooting pain than ran up my neck to my ear. Alot of times, (not all) just swallowing would trigger the shooting pain. Mine was in the middle of my my throat/neck slightly right but not much. I imagine it might depend on where the styloids or calcifications grow as we all are different.
After this past surgery, that area did hurt when swallowing and was sore for awhile even though doc said he didnt go that low during the surgery. Go figure? I seem to be doing pretty good overall but also got shots of sterioids and botox in my jaw to help with my TMJ. That has helped. I’m readying to get a permanent appliance due to bone loss due to osteoarthritis in my jaw on that side. The only residual I have after surgery is alot of numbness under the chin into the neck. It seems to be slowly going away.
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