The Right Diagnosis and Right Medical Team?

A doctor has finally taken the time to explain my test results and suggest a diagnosis based on all of them. I guess time will tell if it’s the correct one, but I’m glad to be at least closer to the answer. I also believe the doctor and therapist I’m currently seeing can help get me to where I need to be, and I’m happy to have found a place where I feel at least reasonably confident I can get the proper help.

I went back to the therapist for the computerized dynamic posturography (CDP) test at the beginning of December. I had some abnormalities that pointed to a visual-vestibular mismatch. I discussed my misgivings about VRT with her and the cost since I had spent so much money on sessions earlier in the year. I really did not want to restart sessions, and I was also concerned that the exercises may not help if I had a bilateral hypofunction. However, the results from the CDP gave her information she could use to select exercises that would actually target the deficits the test uncovered. I felt a little bit better about restarting the therapy as it seemed this time the exercises would truly be targeted. She also said the results didn’t indicate a complete loss of inner ear function and that my body should be able to learn how to use that remaining functionality. When we discussed the cost, it didn’t sound like it would be nearly as much as what I had paid before. She was surprised that the other clinic had charged me so much. However, questions still lingered about the test results and my results from the clinic at the beginning of the year.

I decided to get in touch with the otolaryngologist whom I saw before I met with the therapist to ask him what he thought about the results and if he thought I could have a bilateral hypofunction due to the results from the beginning of the year and the results from the therapist’s testing. He said that he could not completely diagnose me because my results and history were subject to interpretation. When I pushed for more specifics and further explanation, he would not provide them. I was hoping he’d consider consulting with another doctor at one of the bigger clinics to get another opinion, but he ended up referring me to a doctor at one of those clinics instead. I asked for a virtual appointment but could not get one. I was frustrated because I felt that the answer should have been obvious from my test results. If abnormalities were found on both sides, it would suggest a bilateral hypofunction, or so I thought. It seemed ridiculous to me that I would have to travel to yet another doctor to get a diagnosis that to me seemed obvious. I decided to see what else I could do.

I’d been diligently doing the VRT exercises the therapist gave me to do. Doing the first set of exercises seemed to go well enough. Some were difficult, but I was able to get through the day without any additional fatigue or problems doing my usual activities. The second set was different. These exercises introduced more head and body turns. At first, they were fine, but over time, I started feeling more tired throughout the day. I wondered if it was a sign that the exercises weren’t going to work and considered stopping them. I talked with some others in a group online about what I was thinking, and they encouraged me to stick with the exercises but to modify them by slowing down or by other means to keep from overwhelming my vestibular system. I decided to try slowing things down and let my therapist know. I also asked her about revisiting the bilateral vestibular hypofunction diagnosis and about discussing things with the otolaryngologist at her location. While she responded concerning the issues with the exercises, she didn’t say anything about revisiting the possibility that I have a bilateral hypofunction. I didn’t mention it again to her. I remembered that in the portal I could select the doctor as a contact to whom I could send a message, so I decided to get in touch with him that way. I sent him a message asking him to review my results and give his opinion while also asking him to let me know if I needed to make an appointment. After not getting a response and trying to follow up, I finally just came out and said that I was hoping to avoid traveling to see a doctor who was in a much more inconvenient location further away. I asked if there was a possibility that I could be seen before that appointment so I could still go there if needed or would have time to cancel if not. I also asked for him just to let me know if I should just go ahead and keep that appointment. Someone in the office responded and said that he had openings that afternoon if I wanted to come in. I decided to go ahead and give it a try.

At the appointment, the doctor and I discussed my questions. He felt that the results showed that my hearing loss and the left-sided hypofunction his therapist found were due to labyrinthitis. He didn’t seem to think the pattern of hearing loss shown on the audiogram was due to noise trauma. I told him that I’ve had that hearing loss for many years and that it started with that cap gun incident when I was a teenager. He also didn’t have an explanation for the abnormalities found on the right side through the oVEMP and ocular counter roll tests at the beginning of the previous year. He said that there was no right-sided deficit found via the tests with the Frenzel goggles his therapist did. He did say that the treatment would remain the same, so I decided just to keep going with the VRT and not worry about seeing the other doctor. I cancelled that appointment on the way home. Later in the week, I heard back from the doctor through the patient portal, and he had gone over my test results from his and the previous clinic in more depth and settled upon “mild hypofunction left inner ear and an absent VOR response (of uncertain clinical significance)”. It’s definitely an answer, and I’ve spent time since getting it trying to process it.

Concerning the labyrinthitis the doctor was considering at first, I really don’t think I had this. I never noticed any change in hearing loss when I was researching the cause of my symptoms in 2015, and that’s why I had settled on vestibular neuritis instead. Saying that labyrinthitis caused my hearing loss would mean the noise trauma from the cap gun either didn’t cause hearing loss at all, which just isn’t true, or caused an even smaller amount of hearing loss than what the audiogram showed, which he already thought was inconsistent with noise trauma. I think the noise trauma from the cap gun as the cause of the hearing loss makes more sense. I also still believe that I don’t have vestibular migraine. I don’t believe the symptoms I’m having are due to migraine episodes. Can a migraine episode be stopped nearly immediately or very quickly by sitting still in a neutral position and looking ahead at something still? I think it makes more sense that the symptoms are being caused by the triggering of my damaged inner ears, and stopping the triggering resolves the symptoms. I’ve also been trying to process the timeline for everything that happened. The cap gun incident happened in 1995. While I had noticeable hearing loss, especially at night when I was lying on my side with my left ear up, it really didn’t seem to bother me in my day-to-day functioning. In fact, most everything seemed normal. In 2015 was when I had the symptoms and issues which led me to believe I had vestibular neuritis. Over time, the episodes of vertigo/dizziness dissipated as I continued with my normal activities. Later, I began to get really sleepy at work and would fall asleep at my desk, mostly when reading on my computer screen, which oftentimes involved a lot of scrolling. In 2018 was when I started developing other vestibular-like symptoms, like not being able to walk upright without forcing myself to correct the tilt and being unable to tolerate flickering lights and scrolling displays. I noticed spells of vertigo and sensations that the room was tilting. I later noticed more problems with head movements and positions. Lifestyle modifications and supplements greatly reduced these symptoms. I’m left wondering what caused the symptoms and test results. Did the cap gun incident not cause any inner ear damage at all? Even if I had the abnormalities found on the right back then, my left inner ear would still be intact, and my brain would be able to use its signals to process movement and balance information. If the vestibular neuritis caused the inner ear damage on the left, would it and the right-sided abnormalities then be the root of the symptoms that developed over time after the vestibular neuritis hit? Also, what would have caused the abnormality on the right? Could it have been the result of my traditional migraine or something else? I still wonder if the possibility I’ve suspected for nearly two years, left inner ear damage from the cap gun incident and right inner ear damage from vestibular neuritis, may still be possible with this diagnosis. The doctor did say there were no deficits found on the right side, but he also admitted that none of the tests done at his clinic targeted the utricle. However, he also said I could not have a true hypofunction with a normal VNG. He never mentioned the results from the ocular counter roll test, so I don’t know his thoughts on those. The ocular counter roll test involves recording eye movements while wearing goggles, like the VNG, so one would think that abnormal eye movements picked up by that test could also suggest vestibular hypofunction.

While things still seem to be a little unclear and confusing, I’m glad to be closer to an answer. I’m also very appreciative that the doctor took time to answer my questions and even sent me an additional message without me asking for or expecting anything further. I feel I’ve also been working very well with the therapist at his clinic. She has helped the exercises make sense in a way that I’m determined to continue sticking with them. I hope they will help, but if they don’t, that may help lead to the actual answer to what’s happening. I’m very happy to have found a location where I can feel confident reaching out to the medical personnel for help.

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