Here is a short draft of what I was working on four years ago as a way of getting through something that I never thought would happen to me. Since then, I have learned that many people have had some form of facial paralysis and I hoped that what I wrote would help other people going through the same situation. You be the judge.
“It all started with a piece of popcorn.
That’s the way I look at it. It’s better than the reality that I have had a ticking time bomb on the side of my face for five years that I wasn’t aware of until December 2009. It was that month when, thanks to a popcorn kernel I ate at work getting under my gum, I ended up with an infection. My family doctor gave me antibiotics and they seemed to work but I still had this bump behind my ear. Another week of antibiotics didn’t clear it up.
One CAT scan later, I met Dr. Rod Razaee for the first time in March 2010. The doctor said that I had a very big tumor in the area of the salivary gland and did a biopsy. He suggested surgery but I could wait a year or two and have it just observed. As for the surgery he warned me that, from what he saw on the CAT scan, the tumor was pressing tightly on the motor nerve that controlled movement on the left side of my face. There was a two percent chance that, if he operated, that the motor nerve may accidentally be cut and the left side of my face would be paralyzed.
When I saw Dr. Razaee again in April, the lab results came in and the tissue was benign, and we talked more about surgery. I asked him what the odds of it ever-growing back were. He told me one to two percent. I was starting to think to myself that those were the same odds as disfigurement. Four weeks after my visit, I called up to tell his nurse that I wanted to move up surgery for the summer and so I met with him again in May.
I woke up at 4:15 in the morning on July 8, 2010 for the big event. My father and I were at University Hospitals of Cleveland well before six and sat in the lobby until the receptionist said it was time for us to head back. The patients were called to enter the surgery preparation area where I was made ready for the big event at seven. When I woke up three hours later, I thought I was done. It was only when I was recovering in the Lakeside Pavilion room I spent the night that he broke the news. He had to stop.
When Dr. Razaee opened me up and saw the tumor, something clicked in his head and so he took another biopsy. From the preliminary results, it appeared nerve cells existed within the tumor. In other words, it was not just surrounding the motor nerve, but the tumor grew from it and it too would have to be removed. The two percent fear of disfigurement I feared earlier in the year had become a reality.
An MRI had to be done, and then I was going to meet with a colleague of his, an inner ear specialist, since the affected part of the motor nerve most likely reached the ear structures. Nerves would have to be harvested either from the neck or the leg depending on the length of the gap to create a graft.
I went home the next day and was relieved to be there. I managed to get some sleep that night and, while the anesthesia started to wear off, I still wasn’t in any pain. It was a few days later that it finally hit me. I was sitting on the swing of my front porch thinking about what to do and then I started to cry. I had crying jags off and on for the next three days. Okay, I knew there were people much worse off than me, but still this was happening to me.
Time heals all wounds is not really a cliché. I was beginning to sleep well by Tuesday, and even drove the car that same day. The sensory nerves began to come back, first near my nose by Monday, then around my eyes by Tuesday. As Wednesday hit, I began to get these pulsing and pin pricking sensations in and around my ear, where all the stitches were placed.
The physical manifestations of my dilemma were apparent now. The entire left side of my face was paralyzed. I could only eat comfortably on the right side of my mouth and had to shake my head back and forth as I rinsed my teeth. Closing my eye proved to be a difficult. According to Dr. Razaee’s nurse I had neurofibromatosis Type 2. The most common tumors associated with this are called vestibular schwannomas or acoustic neuromas. Incidences of getting this can be as high as one in 25,000 though Doctor Razaee did say 1 in 10,000.
I knew that I’d never get a perfectly symmetrical smile again and the nerve graft may not even take hold. However, I did believe that it is possible that perhaps the nerve MIGHT adjust, grow some axons, and the 12 to 18 months rehabilitation might lead to something better than a frozen face
The week before going back to work was busy, and not just with seeing Dr. Razaee. I drove for the first time since my surgery on the Monday after and, on Friday, July 16, 2010, I had my MRI. Then, a week later, I met Dr. Maroun Semaan.
Dr. Semaan already saw the MRI and clarified a few things that until then weren’t. While Dr. Razaae and his nurse said it was a neurofibroma tumor, the MRI showed that it wasn’t. Instead it was a Schwannoma tumor, very similar, and both listed as neoplastic causes of facial nerve palsy. Also, from what he saw of that side of the head, the affected part of the motor nerve didn’t reach into the inner ear area but a point below. In other words, I would not permanently lose any hearing or balance. The projected recovery period would be the same as the last. He also said that with the size of the gap to be covered by a sensory nerve graft, the candidate for that would most likely come from my lower leg.
Time was flying and within a month I was back at University Hospital for round two of surgery. I woke up a little after four in the morning on August 17 and preparations went like it did in July. However, when I woke up, it was eight in the evening. The operation lasted eleven hours. I had two drains in my body now, one again in my neck and the second coming out of my left calf. Staples were placed in the incision in my stomach and I had a thick, lightweight gauzy bandage wrapped around my head. I found out later that a friend of mine who visited the next day thought I looked like a mummy.
To my surprise, the pain again wasn’t severe. It did hurt but it felt more like a throbbing pain one would get after being hit in the head by a door. I managed to get out of bed the next day and, by Thursday, I was walking down the hall. By that time, the bandages were off my head and they took out the drain in my neck. Everyone from the nurses to my Father was surprised how I was recovering. The only time I really experienced excruciating pain was when I hit the area where the drain to my leg was. That’s where Dr. Semaan harvested the nerves for the graft
Both Dr. Razaee and Dr. Semaan checked up on me, as they did their rounds. Dr. Semaan was the first to see me and it turned out it was his work in the second half that made it as long as it was. He had to work in the middle ear to get the compacted nerve clear and find a good end to graft the sensory nerves. Fortunately, my balance was fine and most of the range of my hearing remained intact. I talked to him more about this tumor. He explained that this was extremely rare, like 2 or three cases a year. He made a joke saying I must be a very special guy (give him A for effort) and that I should realize that it’s all in the past. “We have found the problem, fixed it, and now we have to work to make it better.”
It was Friday afternoon that I finally got out and stayed at my Father and his wife’s house for the night and then finally got home. On Wednesday, August 25, I decided to drive to the drug store for the first time since coming home to get more drops for my eye. I went there with no problem, turning my head proved to be easy, and I decided if I could drive there, I can drive off to the Shrine of Our Lady of Lourdes in Euclid, Ohio, which is what I did. I went to the grotto and lit a few small candles, one of which to thank God I was alive.
On Friday, August 27th, Dr. Razaee finally took out those stitches and he examined my face. He said I was doing great, and it was because of my positive attitude. He also said that biopsy came back and it was officially 100 percent benign. It was all done and I only had to deal with now was the recovery.
Throughout the fall people noticed the improvement in my face. It began to tone up in October and was symmetrical at rest again by December. The first half of the year was in full recovery mode. Then, in the middle of May, something I prayed for happened. The left side of mouth could move! While I ended up with a crooked smile, it was still a smile, the first one I had in over a year. I e-mailed people I knew about this I was so happy this was happening. When I saw both surgeons in July, they were completely amazed.
Compared to some of the other things I’ve had to deal with in my life, dealing with a Schwannoma tumor and its treatment has proved to be better than I feared. I know I will get better from here.”
Since this time, I have been going to follow-up sessions with the two surgeons like everyone does after an operation like this. They say that, after two years, nerve re-growth tends to stop. However, to their surprise as well as mine, even today I have seen some more movement. For example, in last month’s appointment with Dr. Razaee, he did notice that the lower left side of my mouth was starting to move a little when I smile. This is surprising since, during the operation, they couldn’t attach one of the nerve grafts to that area. People say these days that they really don’t notice that I even had the surgery but I’m still kind of self conscious when I try to smile.
It’s a shame I don’t have the original manuscript because I did extensive research on neurofibromas and their treatment. Could I write a book on this? Would it help people in similar situations? I don’t know. This April, I go for my first MRI in over two years and we will see how things are.