The most important lesson I can pass along is to be very positive, diligently do the exercises your therapist prescribes, and do not feel you are different.
When I was young I used to run along curbs for fun. As I aged I found I would fall off. To me this was just part of aging. Then by accident it was found that I had an Acoustic Neuroma (AN), a benign tumor that grows on the hearing nerve and involves the facial nerve.
I started to notice the balance issue +/-15 years ago. I had always had outstanding balance in the past, so this was frustrating. Over time I could tell that the hearing in my left ear was decreasing as well. After spending 20 years (not consecutive) as a career and volunteer fire fighter, I thought the noise over time had caused my hearing problem.
I saw a hearing doctor in Tampa who recommended a hearing aid for my left ear, but he did not do anything to further diagnose my problem. In time my lack of balance affected projects around the house. I was a perfectionist painter (no spills, etc.), but in time that was getting worse. More paint in the wrong places.
I found out about my AN in a rather startling manner – I passed out from hunger before my colonoscopy and broke my nose. I went to an ENT who fixed my sinus, and when I told him I had a hearing problem on one side he decided to do an MRI to rule out an AN. His call two days later was a shock. He gave me the phone numbers of John’s Hopkins and Dr Prasad. Dr Prasad is about two miles from my house, so I called his office and they took me in that day. His office has the best staff I have ever experienced. I never felt uncomfortable there.
The AN was removed during seven hours of surgery, which happened to be on my birthday. I was not prepared for the balance issues I would face since I did not understand the extent of post surgery recovery.
Having my world swirl around me, even when still, had me very concerned. When I was walking I often had to stop, look down, hold the wall, sit down, or close my eyes and try to not fall or get sick.
When I started balance therapy, Stacey (at the Balance Center of Maryland) explained to me where we would be going and how I would get there. However, I have to admit that I did not understand the logic of the exercises. I was very impatient and wanted to be “normal” as soon as possible. I wanted to know how long it would take to fully recover. Unfortunately, as those of you who have suffered through and recovered from an AN know, this was to be a long process
One of my more challenging experiences was at an airport. I was walking through the Minneapolis Airport when I rounded a corner and my mind went into warp drive. There was this checkerboard patterned floor that made my eyes twitch; I actually had to stop and close my eyes. Then I went back and practiced walking over the floor. I fly through this airport at least four times a month, so I needed to be able to deal with this. It is still the hardest thing for me to conquer.
My wife, as my caregiver, knows my drive and determination. She had no doubt that I would do well and progress. Most of the time my attitude has been very positive, but I also learned my situation would get worse before it was better.
Preparing yourself for the unexpected can help. I typically know where I will have an issue and prepare my mind for the moment. I know I will have problems when I am very tired or turning my head and stepping down at the same time.
I travel for work and on the second flight six weeks after my surgery I was watching the flight attendant in the front of the plane. Slowly, like a Hitchcock film, it looked through my eyes like the plane was very slowly rolling to the right. It “rolled” almost 90 degrees before it snapped back. I asked the person next to me if the plane had made a turn and he said no. The oddest situation is that I am stable walking up the aisle on a plane during turbulence!
I also found it helpful to attend support group meetings, where I could hear from others who were going through the same challenges. It is one thing to understand your condition from a clinical perspective, but to hear the experience of other patients gave me a great deal of comfort.
I know I may never recover 100% but I will strive to make it there. The most important lesson I can pass along is to be very positive, diligently do the exercises your therapist prescribes, and do not feel you are different. Everyone has an issue. Some just hide it better.