Yesterday, June 3 was my two year anniversary of An surgery. For those who don't know me, I am 37 and was diagnosed on May 8 2004 with a 4 cm right AN. In Feb 2004 I noticed a little numbness on my cheek. In March I started having dizziness. By the time I was diagnosed I also had fullness in my ear, extreme tiredness, stomach upset, and shoulder pain. All of these were related to the AN. However my hearing tests were normal. My surgery was at University Hospital in Cleveland with Drs Megerian and Selman. I was in surgery for 20 hours. My tumor was very sticky and stuck to everything. They had to peel it off layer by layer, which took 16 hours. It was stuck to 5 cranial nerves and my brain stem. As a result I lost my hearing and have facial paralysis and numbness. I'm happy to say that my facial paralysis and are both still recovering. I have seen the most improvement in the last 6 months.
The pain meds after surgery put me through a vicious cycle of nausea, vomiting and sleep and after 8 days I was moved from University to an inpatient rehab hospital near my home. Interestingly enough, once all pain meds were stopped I made a quick recovery. I spent 8 days in the rehab learning to walk again, building strength and stamina and having the kinks worked out of my neck and shoulder. After my release from the hospital I continued out patient PT for another month and OT for another 2 months.
I've been through a roller coaster of emotions from anger to sadness. I am the same person yet a different person. I am tougher and less tolerant of people. My husband says I don't suffer fools well. I still have trouble with my memory...I've forgotten my own phone number on occasion. I write everything down. I've noticed that my creativity seems to be gone. It's hard to come up with an original idea. I also have a tough time with decisions. I used to be a little indecisive now I'm very indecisive. This is my new normal and it has been an adjustment.
Last year I went in for my BAHA and the anxiety of surgery was much worse than the reality. The Baha has been a blessing to my life. It is not a miracle cure but a great help to the quality of my life.
I also have a punctual plug in my eye which still does not blink or water on a regular basis. The plug has lessened my reliance on lacrilube and my eye feels better.
I still have neck and shoulder stiffness on occasion and I get sinus headaches on the AN side only when the weather changes. I have to be careful with my balance especially when I try to do something in a squatting position, like planting flowers. I usually end up falling on my butt. I always have my chapstick with me.
I can't believe how much this AN journey has impacted my life. I went into surgery hoping I wouldn't lose my hearing and I had no idea that facial paralyis was even possible. I also didn't know that facial paralysis involved your eye and that numbness is something totally different. I thought I'd be home from the hospital in a few days and back to normal in a few weeks. When I first found the ANA I thought I'd be a short term visitor.
The An journey has changed me and readjusted my view of normal. I'm happy to be a survivor and sad that my kids have had a mom who has been through so much. My kids were 8, 6 and not yet 2 when I had my surgery. They ended up spending almost a month at my parents house as I worked hard in recovery.
I share my story today to give hope to those just beginning the journey. In my case, life has improved and is still getting better.
