My journey with brain disease begins in 2017. I began having daily migraines that were so painful I couldn’t manage life anymore. I would still push myself and go to work every single day, even though I was in excruciating pain. When I was having migraines, they were always in the back of my head on my left side. I have been very lucky to have a doctor who always believed me when I told her that something was not right. When I went to see her about the headaches, she sent me to have an MRI of my head. I was honestly convinced that I had fibromyalgia, or some other debilitating chronic pain disorder. Imagine my shock when I received a voicemail from the doctors office, telling me they found an unknown abnormality in my brain. That is never easy news to hear, but getting it on a voicemail made it even worse.

I found a neurologist who was able to see me fairly quickly. He did an assessment on me, and we reviewed my MRI results together. The abnormality on my brain was actually in my cerebellum, adjacent to my brain stem. The abnormality was a cavernous angioma. My neurologist referred me to a NeuroSurgeon at Barrow Brain and Spine. I met with the neurosurgeon about a month later, where we decided that the best course of action was to watch and wait. The lesion on my cerebellum had previously bled, but I did not have any symptoms outside of migraines. I would have a follow up MRI in six months, then eventually it moved out to annually.

In August 2020, I had an MRI that showed my angioma was plumping up. My neurosurgeon was concerned that it was preparing to bleed again. Because the angioma was so close to my spinal cord, my neurosurgeon felt that it was time to start talking about surgery to resect the angioma before it bled. Because of the Covid pandemic, I was not able to have surgery until February 2021. The surgery was a success! The entire angioma was resected. However, it was very friable and ended up bleeding during surgery.

Recovery consisted of vestibular physical therapy and lots of rest. I was most scared that somehow my personality would be removed during the surgery. I was not aware that HOD was a possibility for me. Two months after surgery,I was finishing up physical therapy but I wasn’t getting any better. In fact, I seem to be getting worse. When you have surgery in the back of your brain or on your brain stem, it severely affects your balance. I was dizzy all the time ( like I had just gotten off of a merry-go-round) and I started to have a lot of eye pain in my right eye only. I called my neurosurgeon and he asked me to see my ophthalmologist to look at my eyes. When I went to the ophthalmologist, I told her that it felt like my eyes were swimming through gel and I couldn’t see what I wanted to see. The images were coming in very slowly, and it looked like everything was jumping up and down. The eye doctor found that my eyes were very healthy, my optic nerve was perfect, but that my eyes were off vertically by 3°, and that I had developed radial nystagmus in my left eye. I had some pretty severe double vision, but my brain was working very hard to meld the image together, so I didn’t notice the double vision too much.

Once the ophthalmologist determined that this was not an eye issue, my neurosurgeon sent me for a new MRI. And this MRI, they found a new lesion that look like a demyelinating lesion, and it was thought that I might have multiple sclerosis. I sent all of my records up to the Mayo Clinic in Scottsdale, and asked them to review my case. They accepted me, and I was assigned to a neurologist who specializes in multiple sclerosis. He ran several tests including a test that checked for auto immune diseases in my blood. I was also sent for a spinal tap. All the test came back clear, there was no MS. It was then that Mayo’s radiologist reviewed all of my prior MRI’s and determined that the lesion was actually Hypertrophic Olivary Degeneration. Both mayo clinic and Barrow Brain And Spine told me that very little is known about HOD, and that the lesion would likely resolve on its own.

I immediately found the Hypertrophic Olivary Degeneration support group on Facebook, and asked them what I should expect. To my surprise, the lesions do not resolve on their own. In fact, this is a forever diagnosis. The only information we have as patients comes from each other. One of the leading symptoms of HOD is fatigue, so it’s very difficult for us as patients to fight for our health and answers. The Hypertrophic Olivary Degeneration Association gives me hope that the newly diagnosed won’t have the same struggle in the future that we have now.

I have since been able to return to my career and accounting/finance. I was concerned at the onset of HOD that I would not be able to work and become disabled quickly. I have been very fortunate with my symptoms that they have eased up and I have been able to continue my life. Some days are much better than others. Every day of my life, someone tells me that I sound great or that I look great, which implies that there’s nothing wrong. There is something very wrong. I will have to live with dizziness for every second of my life. I will have to live accepting that living in a nursing home is a very real possibility for me far earlier than it should be.

Since my diagnosis with this extraordinarily rare brain disease, I have learned that doctors really don’t know everything. The only way that they learn is by people donating their brains to science after they’re done with them. All of my doctors only want the best for me, and I can see the pain in their eyes when there is nothing that they can do to fix this. All I can do is keep fighting and keep learning and try to understand what causes this and how to fix it. I am grateful for this community, as I have never met more brave people in my life. There is nothing quite like staring your mortality in the face,And not knowing what your life will be like a week from now. My mission now is to learn about what causes HOD and how we can find a cure, and not just treat our symptoms.

My life went from planning my retirement, to having a rare brain disease, to having a rare brain disease and an extraordinarily rare brain disease. All within four years.

WARNING: Surgery photo ahead