I am a new member of the forum, just today. I have always been a very active person, eat right, etc. I have done 5 miles on the treadmill three days a week for many years. Fast walk with incline program. I have always been an avid motorcyclist, averaging 22,000 miles per year, have travelled to 49 states, most of them more than once.
Three years ago I was diagnosed with an AN in my left inner ear, was referred to ENT surgeon, Dr Myles Pensak at University of Cincinnati Hospital. The first two years he just monitored the tumor with an annual MRI. The third MRI January 2014 indicated the tumor was growing, was at 1.7cm, recommended surgery, said I was an excellent candidate, was in good health, not over weight, etc. This was the first time I have ever had a serious illness of any kind. He also selected neurosurgeon, Dr Zucarrello with UC Hospital, the two of them have worked together over 33 years, considered one of the top five in the nation, so I was told. I was told by both surgeons prior to surgery there was no question, I would be back on the motorcycle within six months. It is my passion, it keeps me sane !!!!
March 18th, 2014 I had the five hour surgery, was told the tumor was 100% removed, they spent over two hours disecting the tumor from my facial nerve, during and after surgery the nerves were monitored and my facial nerve was "pristine"....their adjective..... After surgery the left side of my face and head were completely paralyzed, my left eye was open wide, i could not close it, my mouth was severely drawn. The first day I was in ICU, then step-down ICU.. On the fourth day after surgery, I was to be discharged. That morning I had a fluid drip from my left nostril, told the RN about it, she got a gauze for me to drip on, said she would have it checked. Then a nurse practitioner came in with my discharge instructions, the RN and I told her about the dripping, she said it was normal and sent me home. The leak continued, I called everyday, they gave me the same nurse practitioner that said it was normal. On the ninth day, just like the flip of a switch I got severe head pains, sick at my stomach, called the neurosurgeon, said to get to the emergency room, 84 miles from my home. When I got there I didn't remember the first two days, I had a cranial fluid leak and had developed a meningitis infection. On April 8th the surgery was repeated and muscle grafted from my neck to seal the area where the tumor had been located. In the hospital eleven days, lost 21 pounds... When I finally got home, I was so weak I needed help to get into the house. We had to put drops in my eye every hour and ointment every 2 hours, the pain was unreal. Now over 10 months since the surgeries, I have had 13 sessions of vestibular therapy and 28 sessions of speech therapy with application of electrodes on my face to stimulate nerves. I can now close my eye and blink normally, my mouth is back to normal so I can now eat normally. I still have numbness in the left side of my face, and complete numbness in the left side of my head. I lost 100% of hearing on the left side, have continuous balance issues, dizziness, and 24/7 hurting in my neck... I have not been able to get back on the motorcycle since the surgery, am miserable all the time. I cannot do anything because of the equilibrium issues....I am losing hope and depression getting worse. I am back to doing the treadmill as before three days a week, just to keep moving and sane !!! The surgeons continue to tell me I will have a full recovery !!!!! At this point I have totally lost confidence and believe they are telling me what they think I want to hear.... I am sending this message so others can be aware all is not roses !!!! I go back to UC Hospital again April 23rd for another MRI and follow-up with both surgeons....I am fearing the worse !!!!!!!!!!!!!
