Hello Everyone!
It's been 2.5 years since I was diagnosed with an AN. I am a court reporter/stenographer, and in July 2017 I started having trouble making out words people were saying. I have also been very active in fitness for many years, and for some reason I was losing my balance while working out. I started going to doctors and after several weeks I was finally referred to a neurotologist. He thought it could possibly be Meniere's, but he ordered an MRI and a VNG just to be on the safe side because he told me it could be a benign tumor. I was getting married the next week, so thankfully I scheduled the MRI and VNG when we returned from the wedding. Ignorance is bliss!! I knew something wasn't right after the VNG. When the test was performed on my right ear, I was dizzy. When the test was done on my left ear, nothing. A few days later, I got a call from the doctor's assistant, and the doctor wanted to see me that day whenever I could get there. My heart sank. I was in the middle of a deposition. I don't remember anything anyone said, but I know my fingers were typing. I managed to finish the job, make it into the parking lot, and I started crying. I knew it had to be the tumor he mentioned. I called my new husband and text my family. I headed to the doctor's office, and my husband was working out of town, so he wasn't able to meet me there. The doctor showed me my MRI, and proceeded to explain what an AN was. Mine was pretty large, 4.28 cm and very close to my brain stem. I needed to have it operated on soon. They scheduled an appointment for me with a neurosurgeon and that appointment was in three days and everyone was clearing their schedules to accommodate me. When my husband got home he started doing as much research as he could. I didn't have it in me. I took one look at others' experiences, and it made me more upset. Everyone had different outcomes, and unfortunately the two I read were bleak, but it was their story. From that moment on, I refused to read anything about AN. If there was something I wanted to know, I asked my husband, and he would research it. I was determined that my experience would be my experience, and I did not want to somehow convince myself that I was having symptoms or problems I truly didn't have.
My appointment with the neurosurgeon put my mind at ease. He explained everything in great detail. Both doctors came highly recommended from others in the medical community, so I was ready to proceed with surgery. I was told both doctors were clearing their schedules, and my surgery would be in a few days. I knew my AN must be endangering my health if we were moving so quickly. Both doctors explained to me numerous times that I would most likely be deaf in my left ear, and facial paralysis or weakness is something they were concerned about, but they would be trying to save the facial nerve. I kept telling them, I can deal with facial paralysis, but, please, please, I do not want debilitating headaches. I've seen how headaches affect others, and so headaches were a major concern of mine.
Fast forward to 9/19/17, we hadn't even been married a month, and here I am in the hospital undergoing retrosigmoid surgery. Surprisingly, I wasn't as nervous as I thought I would be. I wanted this tumor out so bad. After a ten-hour surgery, I am awakened and see my husband and mom on the other side of some glass. I try saying their names to call them, but I could hear myself, and my speech wasn't right. They come in, and they explain to me that the surgeons told them that my surgery was more complicated than they expected. My AN was actually sharing a blood supply with my brain stem and compressing it, and the V, VI, and VII cranial nerves were all attached to the AN. Of course, I didn't comprehend everything until the next day. That night I was dizzy and had a lot of nausea, which I would deal with for the next six days. The next day I learned I had left-sided facial paralysis and I had double vision because my VI nerve was affected and my left eye was looking straight at my nose. For some reason also, I was unable to swallow, so later that day a feeding tube was inserted. The next few days went by quickly for me. Zofran was all I kept wanting for the nausea. I wasn't in any pain, and I was off the pain medication within three days. I was able to participate in physical and occupational therapy, and I was doing well, but that feeding tube was the worst thing ever. The feeding tube kept me in the hospital one week until I was able to swallow again. The instant that feeding tube was removed, and I could eat real food, I felt so much better. They discharged me, but I needed to have a gold weight inserted in my left eyelid the next day due to the facial paralysis, so I went home for the night, but was back in the hospital for the quick surgery to have the weight inserted. I was fortunate to only have nausea about a week after the AN surgery.
When I was discharged home, I was on absolutely no medication, but, boy, my balance was off, and my eye was taped shut to protect it and ease the double vision symptoms. Unfortunately, I realized within two days of being home that I had no pain sensation on my right side and I couldn't feel temperature either. I just was not sure why, but I had follow-up appointments the next week.
For the next week or so I just rested in the chair during the day. My husband was absolutely wonderful, and I am so thankful for everything he did and does for me. My family also all took turns helping out, and I am forever grateful to all of them. My husband made sure I had a walker, he put a railing on the bed so I could easily get in and out, and he bought a shower chair. My sister bought a handle to hold onto in the shower and purchased extra socks and slippers with grippers on them. Each day I got stronger and had more energy and pretty soon I was telling my mom, "I can do it myself." On my follow-up appointment, the neurosurgeon explained why I had no pain or temperature sensation on my right side. Since the AN was pushing into my brain stem and was sharing a blood supply with my brain stem, the removal and positioning of the AN had caused some damage to my brain stem. I was told I may or may not regain those sensations, give it six months to a year.
When my brother helped take care of me, he took me on my first outing to the grocery store. I could not believe how kind complete strangers were to me. My brother made the comment that seeing the kindness renewed his faith in humanity. After the grocery store we headed to my first physical therapy and speech therapy appointment. I sure was excited to get moving and work to regain my ability to balance and improve my speech. I would continue physical therapy for six weeks, and to this day I still go to speech therapy a few times a year.
One month after surgery, I was cleared to work out again, and I could return to work whenever I wanted. I couldn't believe it! I was definitely ready to return to work. I felt good. I never had one headache. I was happy. Work was extremely accommodating. I mean, my eye was taped shut, I had facial paralysis, and being a court reporter and deaf in one ear isn't ideal. I was given simple cases to report. Life was pretty much back to normal -- or my new normal.
I did have facial reanimation surgery at Johns Hopkins with Dr. Byrne in May of 2018. I had a nerve graft and a cross-nerve transfer, and I gained 30 lbs from not being able to walk much for three months due to my ankle being so swollen from where the donor nerve was harvested from. Dr. Byrne is a wonderful surgeon, and I did get a good result. I have tone on my left side again, and I can make a partial smile when I bite down. I've elected not to do the gracilis free-flap at this time. I am happy with how I am, and I do not want another surgery. Within the last month, I have begun the process of what I will call the plastic surgery/making myself symmetrical phase of my journey. I am going to have a fat graft under my eye/cheek area, and I am getting Botox in my forehead and lip area of my right side to soften the movement.
Still to this day I have never had one headache since surgery. I am fortunate! I am very positive, and I am so thankful I feel well. I have wondered many times when I am going to get upset and question why this happened to me; however, it's been over two years, and I've never questioned it. I feel like me. I go about my day, and I don't think about the fact that I still have facial weakness. I don't realize I'm deaf in one ear unless there is an extremely loud noise or an emergency vehicle with a siren on that is near. Now, don't get me wrong, I have had a few days where I've come home crying because someone kept staring at me, and I felt like I didn't fit in, or the Roomba is stuck somewhere in the house saying "clear Roomba's debris extractors" and I can't tell which direction the sound is coming from and I can't locate it, but that is a rare occurrence. I still do struggle with having my picture taken. I don't see myself the way the photograph looks so it is difficult. I know I can't keep making people feel awkward by my refusal for a photo. This is me, and I am not embarrassed, but I need to be strong and put on my best smile and cherish the memories being created instead of avoiding it. That will be my goal this month...no refusal of photos. Wish me luck!
By far my biggest challenge is my eye, but it is manageable. A good portion of my job as a court reporter is to sit at my computer for hours a day and transcribe proceedings. It has taken a toll on my eye and I have cut back and I am in the process of making a career change.
I have regained a very small amount of pain sensation on my right side, and even though I can't feel temperature, I do get a sensation that tells me to pull my hand back if something is hot or cold. I am proud to say that I worked extremely hard to get my balance back, and I have accomplished that goal. My balance will never be 100% perfect, but I am as close as I can get, and I work on it every single day. I have been back doing the same workout classes and lifting heavy weights as I did pre-surgery. I have since lost the 30 lbs. I gained after the facial reanimation surgery, and I am in the best shape I have been in my life. There is no doubt that my commitment to fitness has greatly improved my balance and the deficits I have from the brain stem compression. In the past six months I've begun a career as a certified personal trainer helping those with balance difficulties, fat loss, and general fitness. It is so much more fulfilling than working in the legal field.
There is a silver lining in having the AN surgery, facial paralysis, eye problems, and weight gain -- it has made me an very compassionate person to those with struggles or disabilities or just want to fit in. I try to be kind and say hello to everyone I encounter. I have always thought I didn't judge people, but we all do. I am overly sensitive to it now, but not in a bad way. If I feel myself getting frustrated that someone is driving too slow or acting atypical, I always tell myself, you don't know what is going on in their life, be patient, maybe they don't see well and are just trying to get safely to their doctor's appointment, or maybe they just lost their job. It feels good to treat others with kindness, and that compassion is a direct result of my experiences with AN.
So that's my story, and thank you for reading it. For those who are newly diagnosed, let your journey be your journey, as no two of our journeys are the same. Stay positive, and you can still accomplish anything.
