I am just a few days shy of the 6-month anniversary of my surgery to remove my AN via the Retrosigmoid method at Shands in Gainesville, Florida. I had a follow-up appointment with my wonderful ENT today and that made me think back on the past year or so of my life and how things have changed. I have a lot to be thankful for.
First of all, I recognize that I am not the same person I was a year ago, but I am okay with that. I am now deaf on my left side, my balance is still a little off, and I get headaches a few times a week. I also seem to have chronic fatigue, but I think the anemia they diagnosed at the time of my surgery (and that I haven’t followed up until this Friday) is probably the culprit more than the surgery itself.
On the plus side, I have learned that I am stronger than I ever thought and that I can be very brave when I need to. I have learned that I have a wonderful and supportive network of family and friends that love me very much. I have learned to ask for help when I need it and allow people to take care of me. I have also learned that I am just human and that I sometimes have to admit to myself and others that I cannot do it all.
I could dwell on what I have lost over the past year, because it is significant to me, but I choose to focus on the positive. A brain tumor is a big and scary diagnosis, but thanks to modern medicine and the skilled hands of my brilliant surgeons, I will live a long and healthy life.
I am also thankful for this board and for all of you. The information, support, and reality-checks that I received here early after my diagnosis were life changing. I thank you all for the service you are doing for others who are diagnosed and who just want to know that they will be okay.
Finally, I will try to document a few of the technical and personal facts about my surgery and recovery (probably boring for those of you who are regulars here), just in case there is someone who is doing research finds this post and is curious.
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 (hoping to preserve some hearing, but my main concern was preserving the facial nerve). 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.
Early Recovery (surgery- 6 weeks): Moderate to severe headaches, which we suspect 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. Very minor tinnitus. 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): Tinnitus is more severe, particularly when I have been in a noisy environment or when I have a headache. I still get headaches 2-3x per week, and these seem to be triggered by anything that upsets the pressure in my head (rain, allergies, a head cold, or sometimes no reason at all). During the day, Excedrine Migraine usually works or at least lessens the severity quite a bit. At night, I take Alleve with limited success. My balance still does not feel 100%, maybe as much as 90% on a good day but quite a bit less if I am tired or sick. I still bump into things occasionally and probably don’t walk terribly straight. I have to watch where I walk.
Being SSD has taken some getting used to. I cannot locate where sounds are coming from very well. I have trouble hearing in situations with a lot of background noise, and I also get ‘overwhelmed’ in those situations. For a lack of a better description, it makes me feel very stressed and anxious to be in a noisy place. I will be having surgery for a Baha implant later this year, and I really look forward to that.
My facial nerve still seems to be fine. I have (as far as I can tell) 100% movement in my face. The only thing I can note is that my left eye sometimes feels ‘goopy’ when my eyes water (think, cutting onions). I have to stop and wipe it with a tissue. I am not much of a crier, so I actually haven’t cried in the past 6-months, therefore, I am not certain if I would produce tears when crying. I seem to produce a normal amount of moisture in my eye for everyday purposes.
My scar is not pretty, but I did not have to have my head shaved so most of the time it is not visible. It aches sometimes, but it is not terribly uncomfortable.
I will have a follow-up MRI at the 1-year mark, so I hope to do another update then.
