Otologist/Neurotologist Recommendations

Hello TMM @tmragain, I am afraid I can't be of much help here. My ENT surgeon and others at Mayo Rochester have been great over the 13 years since my first surgery for a temporal bone resection due to cancer. I am not sure that they have a neurotologist there. I see that Mayo Arizona has a neurotologist listed on their website. Have you asked for a referral there or in Florida? I also saw a neurotologist at the University of Michigan Dr. El Kashlan prior to visiting Mayo. I ended up at Mayo because UM could not get my surgery scheduled in a timely fashion.

@tmragain, I'm sorry to hear that your request for an appointment was not accepted. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Unfortunately Mayo Clinic has more requests for appointments than available openings. You might consider a couple of options if you would like to pursue care at Mayo Clinic. Like @sepdvm suggested, try a different location if travel is not a barrier. Ask you current doctor or specialist to submit a referral, or simply try again in case there is an opening.

I added your question for recommendations to the Hearing Loss support group as well as the ENT group so more members can jump in, members like @rinagelman49 @julieo4 @willows @rkoepke and others who have experience with similar issues: hearing loss, tinnitus, hyperacusis, vertigo, etc.

I can imagine flying or traveling long distances with these issues would be challenging. Would you mind sharing what state you are in? That way people can make recommendations closer to home. Do you live near a large university medical center?

Please let us know what part of the country you live in.

Thank you. I live in Illinois. About 5 hours southwest of Chicago in a rural area.

Since I was recommended by the mentor, I will add to this, but unfortunately I’m doubtful about my usefulness. As said in other posts I’ve had, and have some, but not all of the symptoms you have. I too have worsened since surgery with tinnitus, hearing loss, fullness in my head, pain and vertigo. Have been (unsuccessfully) on a quest to “cure” all of these. The one thing that has helped me is my mindset, and “acceptance” of my disability. You ask how it has helped, well, I no longer get up fast, I very rarely sit in a room without some sort of noise (my favorite noise is smooth jazz), in addition to the nerve blockers I’m on, I use CBD ointment for pain, and gummies for sleep. I go to a physical therapist for help in getting my motion back, which has slightly given me some relief of pain. As for my attitude, I use to hold modern medicine and doctors in the highest esteem, no longer. I realize they are human and are “practicing” medicine. There’s a reason they use that term, because there are things they don’t know. Don’t tell them this, but they are not GOD’s. As much as we all would like to get cured, sometimes they just don’t know the answer. Have I given up? NO!!! But, I have set my mind to dealing with what I have and continue to hope!! Like I said in the beginning, I doubt this will help, but it’s made me a lot more at peace and my wife can once again love and support me. Good luck, I will pray for you and if you find that doctor that “fixes” you let us all know what he did. Cause we all need to hear when someone else wins, it gives us hope!!!!

Accepting that the specialists are not able to "fix" anything to do with tinnitus, and learning to live with it, is the best option until the puzzle is resolved. It is a disability, usually unrecognized by anyone because we sufferers are the only ones who " hear" it. ENT docs are unable to help, and I believe it is nerve damage but as a neurologist told me, you can't really see that on any test or fix it with any drug. So you cope with living with the dizziness, noise, and trying to hear over it. I find that having a project or two going on all the time and a houseful of pets to distract me from myself help more than anything. Sort of: where there is will, there is a way.

I’ve had tinnitus and vestibular symptoms ever since my initial injury, which was a penetrating ear trauma.
My initial injury embedded the stapes into the vestibule, fractured and dislocated the incus. This all happened on 12/24/23 and I had surgery on 1/2/2024. I was almost back to normal, besides the tinnitus and hearing loss, when I had my first surgery to repair the fracture. Supposedly the ENT “ever so gently” pulled the stapes out of the vestibule. I believe that’s what created the fistula and rocked my brain. Since then, I’ve had 2 additional surgeries by another specialist to repair 2 fistulas that he was able to visualize. I’ve always felt almost “normal” after each PLF repair, but it never lasts. I can live with the tinnitus most days until it becomes a roaring ocean/waterfall that’s pulsating. When it’s that loud, it can be a struggle to concentrate or even hear. I have also struggled with the vestibular symptoms ever since the first surgery. I woke up and felt like I had a brain injury. I had to walk with a walker for weeks. I missed 23 weeks of work in 2024. I feel like the fistula has never healed. I don’t see how it will ever heal if the stapes is always vibrating on the oval window. I get pressure if I plug my ear with my finger and I fail the pressure sensitivity test every time. Now they are wondering if I have Cochlear Hydrops because of the hearing fluctuations or Menieres. I don’t always get the spinning vertigo with each episode. It’s random and is becoming less frequent. Initially the spinning vertigo started this past November and would last 20 mins. Now when they come, they don’t last but a few minutes. I’m just hoping I can find someone that can understand all of my problems and have some recommendations. I’m not looking to jump into another ear surgery unless the surgeon has done thousands. In the meantime I have found that if I just try to go about my day as usual, my mindset it much better. Some days are harder than others because I was a very active independent person and now I have limitations. That’s whats frustrating for me. I’m used to caring for patients not the other way around.

Yes, I have found mindset is key. The more you dwell on our symptoms, the worse your symptoms seem. I finally had to just tell God one day, I don’t understand why you’re not healing me but I trust you. I have to keep telling myself that. I just wish it would stabilize somewhere, so I can move on. That’s what’s frustrating for me. Luckily, I do not have any pain. Occasionally I’ll get a sharp shooting pain, but thank goodness it doesn’t usually last but a few seconds. Thank you! I will pray for you as well! I will let you know when I find that special Dr.

Thank you. I am currently a patient at UIHC in Iowa City. I am willing to travel for the right doctor and of course insurance acceptance.

That is pretty acceptable driving distance to Rochester. Did your ENT doctor try a referral to ENT at Mayo there? Sometimes that may create a better response than patient request. I have another suggestion that helped me with nerve healing. Research Lion’s Mane mushrooms, as there are studies that support their use in aiding nerve function and healing. I use a powdered product in my coffee every morning by Four Sigmatic. There are capsules at Real Mushrooms.com and I have even found the fresh shrooms at the grocery lately. They are tender and mild when lightly sautéed in butter.