Hello everyone! I had an AN removed over 3 years ago. I haven't been back in quite a while and I just wanted to give a little perspective and share my journey since my AN.
My Story:
Diagnosed October 15, 2009
Left Side Acoustic Neuroma, 7mm x 9mm
My initial presenting symptoms were extreme vertigo, balance issues, and fatigue. My hearing tested normal on both sides.
Retrosigmoid 12-14-2009 at Shands, Gainesville, FL. I chose the Retrosigmoid method hoping to preserve some hearing, but my main concern was preserving the facial nerve. During surgery, it was determined that my hearing nerve was entangled in the tumor and had to be removed, therefore I woke up completely SSD on the left. My facial nerve was undamaged and I had virtually no noticeable facial impact at any point pre or post-surgery.
Early Recovery (surgery- 6 weeks): Moderate to severe headaches, which we suspected were from neck muscle spasms. Muscle relaxers helped and so did narcotics which I took sparingly. My headaches lessened in severity and frequency with time and I stopped the narcotics at about 4 weeks. I had very minor tinnitus early on. I had severe "wonky head" early on, but compensated fairly fast by walking, doing home vestibular exercises, and using the Wii Fit balance exercises. I was back to class/driving at 6 weeks, but still tired very fast and needed to rest a lot.
Intermediate Recovery (6 weeks-6 months post-op): My tinnitus was more severe, particularly when I was in a noisy environment or when I had a headache. I still had headaches 2-3x per week, and they seemed to be triggered by anything that upset the pressure in my head (rain, allergies, a head cold, or sometimes no reason at all). During the day, Excedrine Migraine usually worked or at least lessened the severity quite a bit. At night, I took Alleve with limited success. My balance still did not feel 100%, maybe as much as 90% on a good day but quite a bit less if I was tired or sick. I still bumped into things occasionally and probably didn't walk terribly straight. I had to watch where I walked.
Longer Term Recovery (6 months- present, 3+ years): Most days I don't even think about what life was like before my AN--and I mean that in a good way. Since my AN I graduated Law School, passed the bar, began a new career, ran a 5-K for the first time, got divorced, continued raising two children by myself, and started dating again. My life is full and happy and I feel like a lot of the success I have experienced comes from a positive attitude and my refusal to let "this thing" slow me down.
The SSD is still annoying at times. Without even thinking about it, I usually strategically place myself in positions where people are on my good side. Most people never know I am SSD unless I tell them. I do get tinnitus in my AN ear fairly frequently, but it is not something that I have found as disruptive as some. Usually, I don’t even notice it. I would consider a Baha in the future, but it is not in my immediate plan.
My facial nerve seems to be fully intact. I do notice that my eyes water and my nose runs a lot more since my surgery, particularly when I am eating or drinking. I always keep tissues nearby. That being said, my face appears normal and I don’t notice any weakness on either side.
My balance is not what it used to be or what would be considered normal for a person my age. I do have to watch where I am going—but again—I usually do this without thinking about it. I exercise regularly and that helps since so much of my “balance” comes from compensation through my vision and muscle control. I notice my balance issues the most when I am very tired or, for example, if I have a glass of wine.
I do think I tire out more easily than I used to, but a healthy diet and exercise help with my energy level. Oh, and I do still bump into things. I’m generally always sporting a bruise here or there.
Headaches are rarely an issue anymore. When I do get headaches, they are more the garden-variety type and not the painful migraine-type headaches I had early on. I haven’t experienced a headache in months that Tylenol couldn’t handle. I am most prone to headaches when I am extremely fatigued or have had a stressful day at the office….but who isn’t prone to headaches under those circumstances?
What I would tell others who are going through this is to keep a positive outlook, do a TON of research, and don’t be afraid to push yourself a little bit in your recovery (within the bounds of your doctor’s orders!!!). I didn’t “give in” to the balance issues early on in my recovery, I worked hard, and I credit that for some of the reason that I have been able to come so far. I refuse to live anything other than a normal life. I also realize that I am extremely lucky and my outcome was very good. I applaud all of the men and women who struggle with outcomes that were not as successful as mine and still maintain a positive outlook on life.
Most days I feel normal. I don’t long for my pre-AN days because this experience is just a part of who I am. Fighting through my AN treatment and recovery made me stronger and taught me that I can dig deep and find strength when I need to. For those of you who are recently diagnosed, I wish you the best of luck. You will find a lot of very scary stories out there, but remember that there are a wide range of outcomes and there are a lot of us who had good ones too. Carefully select your doctor and your treatment plan and then jump into it feet first with the determination to make it through. You will be ok and you will still have a long, productive, happy post-AN life.
