No Surgery - What Does This Mean?

At my neurosurgery appointment last month. we were greatly relieved to learn that surgery for the other brain tumor is not necessary at this point.

Are you confused?

That is okay if you are because we were also confused at first. We were not quite sure how to react after having the mindset over the last 9 months that I was going to have surgery again this fall. It was an odd mix of emotions but ultimately I chose to embrace this surprising news and enjoy the feeling of release from this burden for awhile.

I know some of you are not religious people but I am very spiritual and you have not been through what I have. So how would you know what it is like? I can say that I have never thanked God so much. In the days following the news, I walked around in disbelief of all that I have been through in the last 4 years and very thankful that God had helped me through it. There were times I just could not even imagine reaching this point or fathom that it could get better. I had this tremendous upwelling of buried emotion when I reached my remission from cancer years ago. It was just incredibly shocking that I had lived and that it was pretty much over. It has been a similar feeling to have bought some more time and not need another surgery so soon.

The saga of life with NF2 is far from over but for the moment I am savoring the pause. To be expecting and dreading a brain surgery for months knowing what I would have to endure again, and then to be suddenly released from that burden, is like winning the lotto when you are near bankrupt! I have been planning time for a recovery and worried about packing activities in before I run out of time, and now I am free! I can dive all fall and winter and pursue other things!

As I said, NF2 is not over. I still have tumors in my head "too numerous to count" as do other people with NF2. While we took part of the tumor out last year to take pressure off the brain stem, there is still tumor remaining which can and may very likely grow back. How long? We don't know. Some people have had regrowth significant enough that it warranted surgery again in 3 years. I have passed 1 year so I have another 2 to sweat out.

Meanwhile, the tumor on the OTHER side of the brain stem is compressing it but I am not showing symptoms serious enough that surgery would be needed. I am actually doing quite well at the moment which is the best I have been doing over the last 4 years. The aim is quality of life over tumor removal. As you know, a cure to rid us of these tumors for good does not exist yet. There are no guarantees on improving quality of life through surgery. As a matter of fact, it could get worse and even result in loss of life. Therefore, unless there is an intolerable complication that needs to be addressed (such as the trigeminal neuralgia I had last fall), it is a "don't fix it if it ain't broken" philosophy. There are many risks with surgery so you need to weigh them against the potential benefits. Then you must evaluate, is the risk worth it?

So the plan......
We are going back to the "wait and watch" method which began when I was diagnosed in July 1999. The tumors continued to grow after diagnosis but at a slow rate and I used that time to take advantage of the hearing I had remaining (and my perfect sight and balance). Less than 5 years later one of the tumors grew really large and very rapidly for no apparent reason. It just happens like that. There are no set of guidelines to follow. You just wait and see. So within 5 years from diagnosis I had to pursue a treatment and I became completely deaf, sight impaired, developed facial paralysis, and lost my balance function. The following 3 years were watching that tumor to see if it was going to respond successfully to the radiosurgery in July 2004. It did not improve the way we had anticipated so I inevitably needed a surgery for that one tumor.

So 9 years so far. We are going to go back to monitoring them every 6 months thru MRIs and evaluation of symptoms.

I am EXTREMELY lucky to have made it to the age of 37 and get away with only 1 surgery thus far! According to my age of diagnosis I am a mild case. Yet, due to the number of tumors I have I could be classified as severe. I do not fit either classification of mild or severe. So maybe I am some new mild form with many tumors that grow very slowly or not very much at all.

Hopefully that will buy me some time while we wait for a cure!