Frustrated in My Search for Proper Medical Professional Help

[Joe159]

Frustrated trying to find the proper professional to help with my tinnitus.

Keeping it as short as possible.

My tinnitus is constant. However, I can stop it completely moving parts of my neck, head and jaw. Not alter the sound. Stopping it completely. MRI showed the TMJ is disk fine. I've seen 10 plus doctors from Johns Hopkins to DC to Philly. No one has been able to help me with this tinnitus that I can stop at will. So frustrating.

 

[Contrast]

You are one of many who made the same mistakes. There is none, not until Neuromod and University of Michigan get past their clinical trials and tinnitus devices on the market in 1-3 years.

Let's try to figure out what caused your tinnitus?

Do you have a history of loud noise exposure, loud music, loud cars, loud factory work?

Do you have TMJ or cervical (upper back issues)?

Any medications that you started before your tinnitus?

Do you have pain from noise, noises sounding too loud, anything described as hyperacusis?

Does the muscle in your middle ear spasm from noise?

It is very interesting you can stop your tinnitus using that method.

 

[Joe159]

My eardrums are retracted deep and wrapped around my hearing bones. Very weak eardrum. Eustachian tube problems. Johns Hopkins felt I had patulous ET. Treated for that and took meds to irritate and close my ET. Months later it appears my ET is not patulous but traditional ET disorder. Early on over a year ago when it first started. A TMJ clinic told me my bite was off. Crooked. And they wanted to make me an appliance to adjust my bite. I believe permanantly. I did not want to do that and I dont believe any TMJ problems I may have is severe enough to cause tinnitus. 2 oral surgeons agreed and said I was correct not to mess with my bite. I believe my primary problem is my weak retracted eardrum. Ive seen video of it at Hopkins. It looks horrible wrapped around those bones. I just cant understand how I can stop the ringing. I push my head forward it stops completely. Or if I push my head backwards stops as well. Jut my jaw forward stops completely.

 

[Joe159]

Also, just got ear tubes placed in my ear. Im told hoping it will strengthen my eardrum. Ringing after the procedure. I suck in through my nose. Ringing stops.

Lastly, if I relax and place my arms and lay them on the top of my head. The light weight of my arms on top of my head pushing downwards stops the tinnitus????????

 

[Lilah]

My eardrums are retracted deep and wrapped around my hearing bones. Very weak eardrum. Eustachian tube problems.

What type of test/scan did you do to get this diagnosis? Also how does the tinnitus sound like?

 

[Contrast]

Do you have a history of loud music, loud noise? That's helpful if you can answer this question.

That usually causes tinnitus.

 

[Joe159]

Do you have a history of loud music, loud noise? That's helpful if you can answer this question.

That usually causes tinnitus.

Yes. I have a history. Hearing tests showed slight and mild hearing loss. I know any type of hearing loss slight or severe can cause tinnitus to surface. I just dont understand how I can stop it completely. I could be wrong. But I would think tinnitus brought out by hearing loss could be alteted by body movement. Made worse, change sound. But not stopped completely. If I had sensorineural hearing loss tinnitus, could you stop it at will with movement?

 

[Contrast]

Yes. I have a history. Hearing tests showed slight and mild hearing loss. I know any type of hearing loss slight or severe can cause tinnitus to surface. I just dont understand how I can stop it completely. I could be wrong. But I would think tinnitus brought out by hearing loss could be alteted by body movement. Made worse, change sound. But not stopped completely. If I had sensorineural hearing loss tinnitus, could you stop it at will with movement?

Your tinnitus has something to do with hearing loss, but we don't know anything else, maybe an oto-neurologist will. There is no miracle cure, sorry.

 

[Contrast]

You are looking for answers that don't have enough questions. Bio-medical research is needed to figure out how the brain responds to hearing loss and the development of tinnitus. You can't expect an audiologist to know these things, or even laymens on a tinnitus forum that just parrot research we barely understand.

We don't know if you will get better or if correcting posture will solve tinnitus, the one thing is certain is that loud noise exposure will make it worse.

 

[Joe159]

What type of test/scan did you do to get this diagnosis? Also how does the tinnitus sound like?

Ive had cat scans on my ears to verify my hearing bones havent started to erode as a result of my eardrum adhered to the bones. Just on visual observation they can see the severe retraction of my eardrum wrapped around the hearing bones.

Tinnitus is not very high pitch. Kind of mid-level pitch

 

[Contrast]

Alot of people with tinnitus also have hearing loss and TMJ combined, as well as some with cervical issues. We aren't neurologist we don't know the technical details of these problems and how the brain responds to them. The best thing you can do to help your cause is donate to bio-medical research.

 

[Joe159]

Alot of people with tinnitus also have hearing loss and TMJ combined, as well as some with cervical issues. We aren't neurologist we don't know the technical details of these problems and how the brain responds to them. The best thing you can do to help your cause is donate to bio-medical research.

Yes I understand. Just trying to navigate through and get a better understanding of all this craziness.

 

[Greg Sacramento]

we don't know the technical details of these problems

Please speak for yourself.

 

[Joe159]

And just to clarify. Im not looking for a miracle cure. Im new to tinnitus and I know its extremely complex. I know a tinnitus forum is not the place to get true medical advice. Just reaching out to members who may possibly be dealing with the same issues I have. And any input they may have has value to me.

 

[Contrast]

Please speak for yourself.

I dont wanna play doctor but it atleast has something to do with cochlear synaptopathy, and TMJ.