I am from Washington. Only doctor I located was in Lewiston, ID. Nice to find someone who can help.
I’d love to hear more! I’m in Eastern WA. I’ve gone to Spokane and Seattle. Nice to know someone else is available nearby!
Take your CT and go to Dr. Burry. No amount of drugs or oral device can even remotely help the way that having surgery. I had a little over 2 Cm off of each side. When you wake up from surgery, even though you are still drugged, you can tell an immediate difference.
Also, getting the pain under control helped me be able to separate other symptoms from that and did finally get diagnosed with Ehlers Danlos Syndrome. As a guess, a lot of folks with Eagles also have Ehlers-Danlos.
Hi Lookingforhelp, have been reading your posts and I’ve found them to be really helpful. Thank you! I think I read you had the intraoral surgery and that worked really well for you. We’re your tonsils already removed? Having been wanting to go with the external approach but your posts has made me want to know more about the internal approach and your surgery. Would really appreciate you sharing your post surgery recovery and if you find any difficulties/ nerve issues. Also, did it take long to heal from that surgery. Thank you!!
Does he do the surgery in Lewiston? At St Joes? Also, did you have external or internal surgery?
The only thing I’d be wary about Dr. Burry is that it sounds like he shortens but doesn’t fully remove the styloids (which might indicate he does the internal approach as the styloids can’t be removed at the skull base via that route). Removal that is as complete as possible is the key to really getting symptoms to go & stay away.
Thanks; that’s good to know. I’ll probably give his office a call just to check in since he’s located an hour from me, but I’m guessing I will likely go with Dr Samji if he will see me.
Dr. Burry did do internal removal on me. He was the only doctor that I had been able to find at the time. That was almost 4 years ago. If I could have gotten them shorter I would have, but took what I could get. I had been fighting it for like twenty years, so at almost 4 years post surgery, my body is still adjusting to not fighting the darn things. My jaw is just finally getting to a different place now that the styloid isn’t pushing it in the wrong direction any longer.
Hi Looking_for_HELP, thank you for posting an update and sorry to hear youre styloids are still causing you issues. This is what I’m concerned about with having internal surgery with the doctor not taking enough of the styloid out. Is this what you think happened with your surgery?
I need to make a decision on surgery sooner than later and the Dr I found performs internal surgery only. While I trust him and know he is a very good surgeon, I’m still not sure if surgery will help if performed intraorally. Were any of your pain/symptoms improved with surgery? Thank you and I hope you continue to heal. xx
No - my styloids are not causing issues any longer. And no, I do not believe that the intra-oral surgery was any problem at all! I think that it has just taken my body this long to adjust to the fact that the styloids are no longer too long. I fought it for at least 20 years… So it just takes a while for your body to realize it can get to a better place. If you think about it, it does make sense. My jaw was getting pushed on one side to the wrong place for 20 years. So even though the styloid is no longer in the way, it still takes quite some time for everything else to adjust.
But don’t think that it takes 4 years to feel a difference. That is not what I am saying at all! The second you wake up, even though you are still drugged, you will notice an immediate difference. It is so incredibly overwhelming and amazing! For me, both sides were quite different, so the relief was different after each surgery. My personal opinion is that there is so much difference because just a small difference in direction can create such different problems - one of the reasons that it is so difficult to ever get to an actual diagnosis to begin with.
Don’t wait for surgery. Get it done as soon as you can. You will be so quite amazed. I was hopeful, but not counting on a huge difference right away. But there was a huge difference as soon as I woke up. And then a few weeks later, i was like, wow, that’s a cool change. Then a few months later, you realize something else has improved. Then something else, and something else, and something else… And here it is 4 years later, and I am still improving. I guess that tells you how bad of shape I was in when I finally found Dr. Burry.
For me, the surgery did totally save my life.
Your message bought tears to my eyes! Thank you, thank you!! I needed some comfort and reassurance today as pain has been bad today. I will respond with a better message soon, but wanted to thank you with all my heart.
Thank you, Looking_for_HELP! It’s really good to hear from an “oldie” on this site. So many people just “disappear” after their surgeries. It’s good for everyone to be able to read stories of successful surgeries especially those where improvement is continuous over the long-term.
That’s a really encouraging post for others; thank you so much for coming back on & sharing your story!