Tinnitus Specialists in the Southeast U.S.?

[Chris_P]

Hello all, so I've widened my search from specific therapies to general specialists for tinnitus as I just want to talk with someone in person about the options. I've searched locally in SC and still need to pursue some contacts, although some seem hit or miss or like they focus on hearing aids.

And I feel like I've read about the treatment options over and over online but want to talk with someone on the cutting edge -- someone who might know things about timelines of new treatments and that sort of thing. It seems numbers I'm finding are sometimes bunk online (most recently called a clinic in NC for the Desyncra device that came back from a search for clinics in America that had the treatment, only to not hear back - which is its own kind of dismaying).

And my ENT had the usual lack of information or options, and I'm just so surprised that ENTs who don't have the answers wouldn't at least be able to refer you, even if it means travel.

Does someone have links for contact info for actual legitimate specialists? And, really, this can be anywhere in the U.S. - I'm willing to travel but would obviously prefer if it were within a few states.

Thank you!!!

 

[FGG]

I'm in the same area and ended up traveling to Hough in OK. If you find someone good more locally, please let me know too!

 

[MRItechssuck]

Dr. Nagler might have some advice for you (Doctor's Corner), if I remember from the old alt.tinnitus boards he was in Atlanta.

When I joined this board I "thought" there was a list somewhere of recommended clinicians and TRT practitioners... but I never found anything like that.

It is amazing how hit or miss it is... do a google search and every local hearing aid specialist comes up looking to sell you something... but you would think every major city would have a tinnitus expert.

I'm beginning to think tinnitus is not as prevalent as everyone says.

Good Luck...

 

[Chris_P]

It is amazing how hit or miss it is... do a google search and every local hearing aid specialist comes up looking to sell you something... but you would think every major city would have a tinnitus expert.

Will look Dr. Nagler up. Thanks for the suggestion.

I had the same experience with hearing aid specialists... On one hand, I was encouraged that there were results in SC, including one with really positive reviews at a speech and hearing center right in W. Columbia where I live! But this one seemed to be all pointed towards hearing aids. I'm 38, don't know much about them, but of course wouldn't be opposed to something like notched therapy if it was a solution. But I really want to talk with someone and have an evaluation that covers the options!

 

[Chris_P]

I'm beginning to think tinnitus is not as prevalent as everyone says.

Curious what makes you think this? My impression is that it is quite common but that there is little science-based research, long approval and trial time for what there is, and a lot of snake oil, like there would be with anything where there is demand. Given that though, seems the only reason snake oil exists - and that people are profiting from it - is that A LOT of people are looking for an answer!

 

[Chris_P]

I'm in the same area and ended up traveling to Hough in OK. If you find someone good more locally, please let me know too!

I think Hough is the first place that popped up when I did an initial search early on. That's gotta mean something, right? Curious how your experience with them has been?

 

[MRItechssuck]

When I say "tinnitus" I really am discussing more severe tinnitus.

I know a few people that say they have "tinnitus," yet never once show any signs that they can't hear... or it overpowers them when wearing earplugs, they can't sleep, use sound machines, etc. Many tinnitus afflicted have what amount to a hangnail in severity.

When I had simply mild tinnitus, I was younger. It was the first medical issue I had to face that was permanent and could have easily been avoided. There are a few young people a day that come to the forum in the same boat... but as with many mild cases... you deal with it, it stops bothering you, or it goes away. When it is new, it IS devastating... because it is new and scary.

The mild cases are most of the ones cited in the statistics in my opinion. Someone could be young, have mild tinnitus and great hearing, but they are OCD and they have been in perfect health... and this mild tinnitus really bothers them. Their carefree life of fun, and their health, has been perfect up until that one night too many at the club. They are really battling the realization of not being perfect.

Given time... even the OCD ones say f@ k it... "it's a little thing, not going away"... and they forget about it.
Just my opinion after 20 years.

 

[FGG]

I think Hough is the first place that popped up when I did an initial search early on. That's gotta mean something, right? Curious how your experience with them has been?

They were very meticulous. I even got referred to a Neuro ophthalmologist to discuss my visual issues. Ultimately, I don't have a treatable form of hearing distortion and tinnitus (yet) but the Dr I saw there took a very detailed history and I was impressed by the time spent. They are able to do an audiogram up to 12000 Hz if you ask, too.

He helped me rule out Meneire's, PLF, canal dehiscence and other treatable causes, which would my first Otologist didn't really address (nor any of the ENTs I saw either). The follow up was good initially but he has been *horrible* at returning calls after that first month so I'm not sure they would be the best if you can't travel to make follow up appointments easily. If that's not an issue, I think they'd be a good choice. Certainly better than the doctors i saw locally.

It was nice to talk to a doctor who not only knew about all the research into regenerative medicine but was excited about it too (check the research thread to see about Hough's own compounds being studied).

 

[Chris_P]

So, here's an update. I was very encouraged to get a call back from UNCG's Speech and Hearing Center just now. I learned about them only through the Desyncra device site, although I'm hoping the consultation considers all options. The admin I spoke with was not rushed at all and had already talked with the primary doctor - Dr. Lisa Fox-Thomas - about what approach might be best for me since I had already had an audiogram and talked with ENT about tinnitus. Normally the evaluation is a full day process, but I may be able to do a 2 hour evaluation, which is also good because they only offer coverage through Medicare. Evaluation rates seem reasonable enough though, at $100 per hour. But also really feel like they're working with me - I am faxing over audiogram results with a written summary of my experience and the process as a first step to chart out a personalized path.

But it was so nice to have a non-rushed, 16 minute initial phone call and feel individual attention and establish raport. And it doesn't hurt that the center is part of a major research university. Full evaluations are booked until May but if I am eligible for a partial eval, I can get in as early as February 6. Will keep you all posted on how it goes. Any progress feels pretty good though, I must say.

 

[Chris_P]

Even just the ruling out of other treatable causes might be worth a trip, I'd think. And I didn't know about the thread on compounds Hough has been working on. Will definitely look into that. Thanks!

 

[FGG]

So, here's an update. I was very encouraged to get a call back from UNCG's Speech and Hearing Center just now. I learned about them only through the Desyncra device site, although I'm hoping the consultation considers all options. The admin I spoke with was not rushed at all and had already talked with the primary doctor - Dr. Lisa Fox-Thomas - about what approach might be best for me since I had already had an audiogram and talked with ENT about tinnitus. Normally the evaluation is a full day process, but I may be able to do a 2 hour evaluation, which is also good because they only offer coverage through Medicare. Evaluation rates seem reasonable enough though, at $100 per hour. But also really feel like they're working with me - I am faxing over audiogram results with a written summary of my experience and the process as a first step to chart out a personalized path.

But it was so nice to have a non-rushed, 16 minute initial phone call and feel individual attention and establish raport. And it doesn't hurt that the center is part of a major research university. Full evaluations are booked until May but if I am eligible for a partial eval, I can get in as early as February 6. Will keep you all posted on how it goes. Any progress feels pretty good though, I must say.

Please update me when you do. That's a doable distance from me.

 

[Chris_P]

Please update me when you do. That's a doable distance from me.

Will definitely keep you posted. I'm hoping to fax audiogram results and a summary of my tinnitus today so hopefully will hear back soon. I do really appreciate them offering to develop a targeted path and gives a good first impression vs charging an outright fee for consultation.

In looking up more on the Hough site, I am curious if the discussed more with you about where their treatment options stand? It sounds like some are pre-clinical so I'm wondering if any seemed like they might be more "on the horizon."

1. Antioxidants: Prevents cellular degradation after exposure to blast or loud noise
2. Silencing RNA (si-RNA): Changes supporting inner ear hair cells into sensory hair cells essential for hearing
3. Nanoparticles: Targeted delivery of therapeutic compounds to the inner ear

 

[FGG]

Will definitely keep you posted. I'm hoping to fax audiogram results and a summary of my tinnitus today so hopefully will hear back soon. I do really appreciate them offering to develop a targeted path and gives a good first impression vs charging an outright fee for consultation.

In looking up more on the Hough site, I am curious if the discussed more with you about where their treatment options stand? It sounds like some are pre-clinical so I'm wondering if any seemed like they might be more "on the horizon."

1. Antioxidants: Prevents cellular degradation after exposure to blast or loud noise
2. Silencing RNA (si-RNA): Changes supporting inner ear hair cells into sensory hair cells essential for hearing
3. Nanoparticles: Targeted delivery of therapeutic compounds to the inner ear

They didn't discuss any more with me than is publicly available, unfortunately.