Ahh! Sigh. I just finished the facial exercises I am supposed to do each day. I HATE doing them and as such have been lazy about practicing them each day and on days I do follow through I have a major procrastination problem.
After finding a huge sore on my inside lip from chewing on it while numb and then continually biting my lip when eating certain foods where I have to open my mouth wider, it became evident that I need to train the muscles of my face and tongue. In addition, I was due to get a dental cleaning prior to the surgery but had to cancel due to the onset of trigeminal neuralgia. I have approval to do so when ready but I need to get my lower lip on the right side to recede when I open my mouth so it is not covering my teeth and hence getting ripped up.
LOL I have to admit this has not been on my list of priorities. It takes 20 minutes to do one set and I have to stand there and look in the mirror. There are lots of other things I rather be doing and taking a nice walk outside is much more preferable. :o) I have a friend with NF2 who had a similiar experience. In his case he had a stroke and was more concerned with walking again and doing the physical therapy than facial exercises. Both of us have minor cases of facial paralysis that are noticeable but really not that bad. Mine is still better than the worst onset I had 5 months after cyberknife treatment. It took a year for the facial nerve to begin to regenerate and give me back some function. It never did go back to 100% but it was at least acceptable and I could finally drink from a glass again instead of through a straw as I had for a year.
I am not having a drooling problem as I have incredible dry mouth right now. I just noticed today that I have not drooled since surgery. I do have problems with food dripping out of the corner of my mouth and down my right chin where it is numb. To combat this embarassing side effect I have to use napkins quite often and stick to small bites where I can keep the food on my left side and not open my mouth much.
I am sure if one were to take a photo of me I would be kind of disgusted looking at it without a perfect smile. Yet looking in the mirror it has not bothered me and I have other things to concern myself with currently. The surgeon was really careful to protect my facial nerve and not do further damage. The tumor had fused to the nerve so the portion which was adhered to the nerve was left behind. An electrical nerve monitoring device was attached to let the surgical team know how the facial nerve was functioning and when they were getting too close where it could be damaged.
This is fine with me. I was happy to know they took this precaution (a question I asked during the surgery consultation). My goal was to preserve as much of my function as possible to use as long as possible. I am aware that the tumor may grow again. It is not uncommon for people with NF2 to have regrowths and subsequent surgeries to address them. I am a spring chicken really with only having gone through the one surgery so far. Others have had numerous surgeries where going through it is like an old hat.
I am a unique case which I am hoping will prove to work in my favor. As I mentioned before, in July 2004 I chose to initially treat this tumor with a type of radiation called cyberknife radiosurgery. Although we had the misunderstanding that the idea was to kill the tumor (which is does not), the goal was to shut down its DNA replication process that causes the tumor to grow in the first place. It did not happen right away and the tumor continued to expand for 10-11 months after the treatment yet has held stable since then. The tumor is not really dead (from what we were informed) but sick. It still has to potential to grow but currently it is not. For now, the DNA replication is at a standstill which I hope holds. I would very much like not to have to get surgery on this tumor again. So I am really hoping that the cyberknife worked and keeps the residual tumor at bay.
Now the tumor on the left is another issue as it has had no treatment and is not an easy one. It is not as uniform as the one I had surgery on. I completely lost the hearing in that ear within a couple years of diagnosis and in the reports it has been more involved with the inner ear canal. I don't know how the facial nerve will fare with either surgery or cyberknife or both with that one. Once recovered from this surgery (perhaps a year from now) we will cross that bridge when we come to it.
For today Harley told me my goal is to try to win the day. What that means is trying the best to be the best you can and accomplishing what you set out to do. One strategy to achieve this is to try to knock out what you don't want to do first so you can get it over with. LOL Historically I have had difficulty with that and procrastinated things I do not like to do and dragged them out (such as this surgery). So anyway, before I went to bed I did the facial exercises for yesterday as I had not done them at all and then I began the day by doing them after breakfast.
Note: When we were talking about this, I realized how incredibly glad I was to not being having surgery this week as I originally planned (Oct 22nd) and to have gotten it over with a month ago. What a relief! Really it was my surgeon's choice to do it sooner when the trigeminal neuralgia (or God) starting kicking me in the pants. It was the incentive I needed to get it done!
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