My name is Alan and I was diagnosed with NF2 in 2008 when I was in my mid 20s. I will never forget the day I was diagnosed because everything changed. As hard as it was, I was able to regroup and continue enjoying my life instead of letting NF2 dictate it for me.
I was woken up on a life changing October Morning in 2008 with severe ringing and buzzing in my ear. This was anomaly for me so I saw my doctor that same day. He was not sure what was going on so he had me see a local ENT who was also perplexed until she saw the results of an MRI that she ordered for me. It was then I was diagnosed with NF2 and everything changed.
I met with the big doctors over at Massachusetts General Hospital and they briefed me on what was going on but I was so confused and overwhelmed that I don’t think I paid much attention at the time. The only thing I really remember was “managing” the tumors I had on both hearing nerves.
About a year after my diagnosis (and when I just started a new job), I was told that the tumor on my left hearing nerve had grown 80% in 6 months and needed to be removed sooner than later. Surprisingly, this news did not startle me. Having NF2 prepares you for this kind of thing and you need to be ready to accept bad news at any moment and come up with a plan. It was late September 2009 when I went into the OR to have this tumor removed. I remember that morning of the surgery I was very calm and my pulse was at a normal level. I was told this was not usual as people normally show signs of being nervous or anxious before brain surgery. I guess I just felt the surgery was in God’s hands and I was at peace with that.
Surgery was a success but the recovery was the most challenging thing I’ve done to date. It took a few months with some minor setbacks but I was able to get back to my normal routine, which for me was soccer. It was scary to get back on a soccer field after that surgery but I quickly felt back at home in my first game back from surgery. Everything, even soccer, seemed so foreign after the surgery which made it difficult to get comfortable with life again. I remember everything tasted funny for a few weeks as well and just a short walk around the block left my legs very sore for a couple days.
In the spring of 2010 I went on a trip to Dublin with some friends and it was right when I landed in the EU that my hearing got really bad, almost to a useless level. I had to cut my trip short and a quick dose of prednisone helped me get my hearing back to where it was. It was very difficult to travel back home, with a layover in a foreign country, while not being able to hear much at all but I did it.
The summer of that same year, my hearing again went south on me. This time it happened when I met my future in laws and future extended family for the very first time. I just started using a hearing aid and I just started my first Avastin infusion all within a few weeks. It was probably the most uncomfortable time of my life with everything going on and all the changes not to mention the uncertainty of everything.
Adjusting to a hearing aid for the first time was hard. I went from not hearing much to hearing everything. The hearing aid picks up so many sounds, much more than I was ever used to hearing in the past. My hearing is very poor, about 30% word recognition on a good day without amplification. Its incredibly frustrating but I truly cannot be put into words. The only way to really understand it is to experience it which I wouldn’t wish on my worst enemy.
Avastin would become a normal part of my life and I have been on it since 2010. When I first started it my tumor was 4 cc’s and after the first 6 months, it dropped to about 3.2 cc’s. I have fortunately experienced drops in the tumor size since 2010 and now my tumor is approximately .8 cc’s. This is a tremendous result for anyone on Avastin as it unfortunately does not help others like this or even at all.
I am pleased to report that since 2010 I have only had 1 stint of hearing loss and was able to regain that hearing back with the help of Avastin, which has been my lifeline. I am now married with 2 beautiful and healthy girls and we live in a small Massachusetts town with our 2 little dogs. I have worked at a large technology company for over 12 years now and really love what I do for work. I also work at home which is very helpful when I have days when my hearing is not so great.
NF2 is a like a roller coaster which has many ups and downs but the downs seem to always have more weight than the ups. This disease has knocked me down more times that I can count but I always get up and carry on. For someone who has lost his hearing twice, has had more chemo infusions than he can remember, had countless missed IV needles and blood draws, had fought with health insurance companies over way too many claims; I think I am doing pretty well for myself. I feel like maybe I was chosen to have NF2 because I am supposed to be part of the cure or solution. Regardless of the outcome, I’m grateful that I have today and I always look forward to tomorrow.