Friday, March 14, 2008

Minority - still waiting for a cure

This whole blog is about living life with NF2. I waited as a long as possible for a new medical development to formulate before being forced to make a treatment choice. Because the one tumor had grown rapidly over a short period of time in 2004 and had become large I could wait no further and had to make a treatment choice to preserve as much life function as able.

I was very afraid to get brain surgery and had been for a number of years (nearly 5 years since diagnosis). Therefore I chose the new and innovative radiosurgery where precise beams of radiation would pass through my brain to the tumor. At the time it appeared the better option which was non invasive and offered a high probability of nerve function restoration. The goal was tumor control and nerve function preservation.

Unfortunately I did not fall into the "lucky" category and suffered swelling of the tumor over 11 months which severely compressed my brainstem causing a slew of unanticipated side effects over several years. I expected to feel a little under the weather for a short while instead of endurimg months of having bouts of sickness worse than any chemotherapy I had. Further, I was told there was a 1 % chance of facial paralysis yet within 5 months I experienced a 50% loss of facial function on the treated side. From the date of treatment I continued to experience the loss of vestibular function reaching its apex when finally going off the steroids 9 months later. With the onset of facial paralysis, I lost saliva and tear production as well as the ability to fully close my eye which left me with dental, eating, and dry eye problems. My brainstem which had been compromised by the swelling tumor caused vision problems (nystagmus and oscillopsia) I could have never expected that are now irreversible.

Here are the links to two articles published about the outcomes of radiosurgery that my friend sent me this year.
It appears I have fallen into the 2 % catergory where everthing seems to go wrong. Unfortunately the "bandaide" that radiosurgery offered me was not adhesive enough and fell off.
I am not the only one though. There are others with NF2 that radiosurgery did not work for and needed surgery to resect the tumor just months after treatment.

So for now I wait and hope a cure is found before the tumor I just had surgery on regrows.

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