I thought with my test results, history, and research, the diagnosis of bilateral vestibular hypofunction was obvious. However, the doctors who had reviewed my latest results didn’t seem to agree. I decided just to continue managing on my own and tell others that I have damage to my inner ears on both sides. My hope is that I won’t have to see a doctor for these issues in the future, but if I do, I’m hoping I can find one who will agree with me and treat me properly.
Back in November, when I had my last round of vestibular testing, I was shocked when the physical therapist who did the testing found abnormalities on the left side but not on the right. The previous testing I’d had done only showed abnormalities on the right side. As strange as the results seemed to be, they seemed to confirm what I had begun to suspect back in 2020, that I had bilateral vestibular hypofunction. I could point to two events that could have resulted in inner ear damage, the cap gun incident in 1995 and the vestibular neuritis episode in 2015, as well as the persistent vestibular symptoms which didn’t seem to be better explained by another condition. As much as the doctors wanted to push vestibular migraine as the diagnosis, it just didn’t quite seem to fit. To me, bilateral vestibular hypofunction made better sense. I decided to reach out to the doctor I had seen initially at this latest clinic. The discussion really didn’t go anywhere.
I decided then to reach out the doctor at the location where I was seeing the physical therapist. He was the one who had concluded that the 2015 episode was actually labyrinthitis, despite my insistence that the hearing loss occurred back in 1995 and not in 2015, and that the abnormalities on the right side were some sort of testing artifact. While he was a bit better discussing things via the portal, I still couldn’t get him to change the diagnosis to bilateral vestibular hypofunction, despite me sharing some of the studies I’d found in my research which I felt added evidence for a bilateral vestibular hypofunction diagnosis. I ended the discussion by telling him I couldn’t understand why the bilateral vestibular hypofunction diagnosis could not be made when it seemed completely obvious, and I told him that I would just handle things myself from here on out. There’s a good reason the title of this post was written as a question. I had a feeling there would be the possibility that things may not go how I wanted them to go and I would be without a doctor who could give me the proper diagnosis and to whom I could go if new treatments were developed that I wanted to see if I could try.
Another route I decided to try was an online second opinion. This site had someone who was a neurotologist. I decided to provide my history and test results to see what a neurotologist thought. Unfortunately, he ended up concluding that it was vestibular migraine as well, so that exercise ended up being a wash. After striking out with all these doctors, I finally realized that I needed to stop seeking out doctors for these issues and be satisfied with my own conclusion. I needed to stop looking for validation and affirmation from a doctor. I felt strongly that my conclusion based on my history, research, and results was the right one. I decided to stop caring what the doctors thought. They were just simply wrong.
Since I struck out with the doctors at the latest clinic and with the neurotologist online, I decided to continue handling things on my own and to tell others that I have a bilateral vestibular hypofunction or inner ear damage on both sides, depending on the audience. I have updated my medical alert jewelry to include a line with “No ototoxic meds” to notify medical personnel not to use medications that could cause permanent damage to the inner ears. I plan to inform my primary care doctor of this decision as well. I also hope that my primary care doctor can record something about me having inner ear damage on both sides even if she doesn’t feel comfortable including “bilateral vestibular hypofunction” as a diagnosis since I’ve not gotten that diagnosis officially. I’m currently in a group on Facebook for bilateral vestibular hypofunction, and I plan to ask questions there as needed as well as to answer what I can. I’ve also done well with internet research and will continue to use the internet as a source as well. While it is frustrating not to have a doctor in my corner when it comes to my vestibular issues, I’m thankful to have these other options at my disposal, although I hope if I do need a doctor at some point I can find the right one.
My bilateral vestibular hypofunction diagnosis is a self-diagnosis, but I believe it is the right diagnosis, in spite of the doctors’ opinions. I’m content to move forward with the options I do have to take care of myself and will hopefully be able to get medical help when I need it.
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