Tonic Tensor Tympani Syndrome — Need to Find Surgeon ASAP

I figured out that I had TTTS coupled with mild Hyperacusis in May of 2016 after about 6 months from when it started after a traumatic gunshot incident. I went to quite a few different ENT specialist and most of them where rather rude and did not care to help me at all. I finally got a proper diagnosis from the University Of Chicago Medicine however the doctor did not want to help me seek the surgery and was very rude to me.

I don't know if it's my long hair and facial tattoos but most of the doctors wouldn't give me the time of day or listen to me when I explain that I am interested in trying the surgery that many people find helpful for this condition. They usually give me some kind of snarky comment like oh did your read that on the internet? They also don't seem to have any knowledge of the recent studies or success that comes from the surgery and are unwilling to listen or look into it for me. They mostly seem to undermine and dismiss the issue all together.

Ultimately I won't be able to move forward with many of the other issues I'm dealing with in life if I am don't at least try the surgery. I have thought about it deeply, done as much research as I can and I am certain that I must at least try it regardless of any risk. However, although I have noticed a few people around the internet and on these forums mentioning that they have undergone the surgery, I have not been able to find a doctor or surgeon that has any experience or knowledge of the matter.

I would prefer to find one in the Chicagoland Area, but I do not care if I have to travel to get a doctor that has experience giving this surgery.

I don't even care if insurance is unable to cover this surgery however I am only on my families high end health insurance plan for another 6 months and they cover pretty much anything so I hope someone here can help me find one ASAP.

 

Useless ENTs... who knew...

 

Good luck on this @Esoterror!

 

I'm assuming you read this and experience the symptoms?
http://hearinglosshelp.com/blog/do-i-have-tonic-tensor-tympani-syndrome-ttts/

 

I don't know...
You realize that having the surgery cuts the muscle? That will make all incoming sound louder, as well as your own voice.

 

As stated in OP I have not only been officially diagnosed with TTTS but I have spent years researching and contemplating this to the best of my ability. I have a textbook case of TTTS mainly a loud uncomfortable and often painful buzzing noise triggered by moderate to loud external noises that is both enhanced by and causes anxiety.

 

As stated in OP, I am clearly aware of surgery and the situation, as a musician I am always wearing earplugs anyway and this is absolutely essential for my life and career. I am not really interested in spending more time on this subject as I really only care about talking about potential Doctors that I can talk too.

 

Best of luck to you.

 

Hope you find a great surgeon.
I have read a lot of good reviews from Dr. Santos at Massachusetts Eye and Ear Hospital, he's very well experienced on these type of surgeries.

 

You would most likely need to go to a neurotologist. I've been to two in the Chicago land area. I went to Andrew Fishman in Wheaton as well as Robert Batista in Hinsdale. I was not a canadite for surgery, but maybe they could help you

 

Thank you, I'm going to try to contact both of these doctors this week. Sounds decently promising; I'm still hoping I can find someone who has had the surgery and can talk about where they got it from. It seems people around various forums including this one get the surgery give it a raving review and then disappear shortly after without mentioning who gave it to them.

 

Anyone here actually get this procedure?

 

Found it helpful?