Good evening! I am so thankful for this site. I was diagnosed in 2015. At the time I lived in Ohio. Went to see three different ENTs before deciding to allow Dr. Lorenz at the Cleveland Clinic to perform my surgery. I had requested the external approach but he insisted that he only did the surgery intraorally. After surgery I was relieved of some of the pressure, but a lot of my jaw and muscle issues remained.
Fast forward to this year, and I am having an exacerbation of my symptoms. The foreign body feeling in my throat, jaw pain, throat pain, swallowing issues, and hard feeling behind my ear near my jaw are all reminiscent of why I sought aid in the first place. My CT scan also showed some elongation of my hyoid bone, but the doctor didn’t think it should cause me any problems. I will be looking for another ENT in California, even though there’s a good possibility that we will be moving very shortly.
Reading all the stories in this site is both reassuring, but also makes me sad that so many of us are suffering. I am sending you all good vibes and a wish for a restful night.
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So sorry that you have symptoms again- it would be interesting to see your CT & look at the styloid length…there are a few reasons why you’re getting symptoms,:
- Not enough of the styloid was removed initially (possibly you know that not as much styloid can be safely removed with the intra-oral surgery), & perhaps with time/ aging it’s enough to cause symptoms again.
- There could be regrowth which does occasionally happen after surgery. It may be that the doctor who reviewed your new CT isn’t aware that the width and angle can play a part in causing problems, not just the length.
- It could potentially be scar tissue causing problems- some members have had this, & tried treatments such as cold laser therapy for treatment, you could search for that in the past discussions.
- Elongated hyoid bone processes can cause issues, we’ve had a few members with hyoid bone syndrome who have gone on to have surgery. Again you can look up past discssions, but here’s one (the member’s had a bit of a complicated journey with MVD surgery, but might be worth you looking in to seeing Dr Chetri)
More updates about my complicated case - General - Living with Eagle
I hope this helps a bit & sending you a hug
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