Kelly Johnson

In 2021 (I was 49 at the time) I began experiencing mild vertigo and headaches more frequently in the back of my head where it meets the spine. I have had mild headaches most of my life which could be 1,000 things so I did not think anything of it. The vertigo was new. My PCP was keeping an eye on it and prescribed me medication to take as needed but it made me very sleepy so I never took it. After 12 months of increasing vertigo, I got to the point the following summer where I could not drive or even walk straight. At work, I felt like everyone talking to me was as if I were in a pool under water.

My PCP referred me to an audiologist. There I received extensive testing and it was determined that my vision and hearing were not communicating accurately. The audiologist referred me to a neurologist which prompted an MRI with contrast. It was then they discovered that I had obstructive hydrocephalus. It was determined that I could have had it since infancy after I contracted spinal meningitis at 1 years old.

I was immediately referred to a neurosurgeon and was told the “good news” was that it was a slow accumulating kind of hydrocephalus. I didn’t even know what it was so I read all I could find and watched every video I could find. Three months after my MRI, I underwent ETV surgery. That was 12 months ago. I took 8 weeks off from work to recover. If I could do it over again and know what I know now; I would have taken 12 weeks and returned part time for awhile.

Finding out what I had was a relief but also devastating. It was a relief to know that my clumsiness and memory issues had a cause but devastating in that I could never be healed or whole. It would be a problem that I would have to deal with for the rest of my life.

Fast forward 12 month post surgery, I am doing pretty good. I take medication for the hydrocephalus and recently experienced severe anxiety and depression issues that require medication. I am currently looking for a job that is a better fit knowing what I know now about my abilities and limitations. I see a neurologist every 6 months and receive MRI check ups annually. I am learning to take one day at a time and not beat myself up when I can’t remember something or explain my thoughts clearly.