Patricia Thompson

Having a vestibular disorder may change your life, but it doesn’t change who you are.

Diagnosis: Perilymph Fistula

I had a dream job – flying, photography, great boss, fun work environment. Then my world started spinning and my dreams all came crashing down.

I was in photography school when an instructor recommended me for a position doing aerial photography for a construction company. I really wanted to do wedding and portrait photography, but this was part-time and would allow me to work around my school schedule. At first it was just me and the owner, but as business picked up we hired others to help. There were three of us in late 2000 when the other aerial photographer left to pursue another profession. I took over the airplane flights, which took me all over North Georgia. The world looks different from the air, I loved it.

In early 2009 I began to feel tired and sick after flights. My malaise continued and began to get worse, until one day I couldn’t get out of bed for two days. I went to my primary care physician, who did blood work and several tests; then I was referred to an ENT.

After hearing tests, an MRI and several other exams my ENT diagnosed me with a perilymph fistula. I didn’t really know what that was but was assured it could be fixed. That was all I cared about. I was an aerial photographer – it was my life and my livelihood, and I couldn’t imagine being grounded, no longer able to soar above the earth.

I scheduled the surgery as soon as possible. The doctor repaired the fistula in my round and semi-circle canals. I flew just before surgery knowing I would be grounded for 6 months, during which time I continued to do ground photography. I finally got the O.K. to return to flight. For about a year everything was great.

Then, in late 2010, I didn’t feel so good during a flight. Sometimes our flights are bumpy, speed bumps I used to call them, so I figured I had a little air sickness. Afterwards I got in my car and returned to the office, less than a quarter mile from airport. By the time I reached the office the world was spinning. I was alone and barely got the door open before I hit the floor.

I hadn’t taken time to eat lunch, so I thought that maybe I was just experiencing some low blood sugar. I tried to eat some crackers and a diet soda, but the cracker became stuck and wouldn’t go down. I was choking. I slammed my back against the door and put my fist against my diaphragm and finally dislodged the cracker. I continued to lie there, however, because I didn’t know which way was up. After about an hour I felt a little better, so I grabbed a hard candy and started home.

During the next flight I took snacks and things went smoothly. However, when I got to the office I started to feel a little sick. I was unloading my images onto the computer when the room started spinning, or maybe I was spinning, I couldn’t tell which. When I was finally able to get home I couldn’t get out of bed for four days.

I went back to my ENT, who found that I had fluid in my ear. He inserted tubes to drain the fluid and recommended therapy. He also told me to stop flying. I am an aerial photographer, so I listened to his advice in the hopes that it would fix my problem so I could return to work.

I went to a therapist for three months twice a week, but nothing helped. I did an internet search for ‘vestibular problems’ and found VeDA’s website, and there it was – perilymph fistula. I printed out the info and took it to my next therapy session. My therapist suggested I try to find someone in my area who treated this specific problem.

I visited the site again and found Dr. Steenerson on VeDA’s provider directory. He did tests and recommend vestibular therapy with Dr. Gaye Cronin. I began therapy the next week, where I was evaluated with machines customized for vestibular problems, and given balance exercises.  These were very different from the therapy I had received before. I improved somewhat and found that I seem to have triggers – scrolling on the computer, windshield wipers, straight lines, flashing lights, lots of things. When I told Dr. Cronin she understood – someone finally understands! She told me that my symptoms are not just in my head, that she has had other patients who tell her the same thing. She explained how the vestibular system works and why these things are so difficult.

Unfortunately, I could no longer continue as an aerial photographer. I couldn’t fly, go on construction sites, process images on the computer, or even make it to work regularly. I trained a replacement and then, with tears in my eyes, left my employer. She is still a friend.

The biggest thing this experience has taught me is that ‘I am Patricia.’ I am myself. I am not defined by what I do. I am a wife, a mother, a grandmother and yes a great-grandmother. My family is supportive. Sometimes I find my daughter and son-in-law “herding me” just to keep me walking straight. When we go down stairs someone gets in front and someone in back, we laugh about it. But I love them and appreciate their concern. I run into walls quite a bit at home but am extra careful when I am out or I take someone with me. I have always been very independent and it is quite an adjustment to be reliant on others. I have good days and bad days. It is something I am still learning to deal with.

If you have a vestibular problem, keep searching until you find help – someone that will listen to you, who will understand and explain what is happening to you. I thought I was going crazy until I found Dr. Steenerson and Dr. Cronin on the VeDA website. They taught me that I am not crazy. I have a disability, and I’m learning to deal with it.

Having a vestibular disorder may change your life, but it doesn’t change who you are.

I am strong. I am smart. I am adaptable.

I am Patricia.