Hi Kaci,
I can honestly say I understand what you’re thinking and why you are thinking it! My surgery was 30 years ago, I was 36 at the time. We have similar experiences both before and after the surgery. My doctor chose my surgeon for me, told me he was the best in the Pacific NW were I live. My Insurance company told me I had to have my surgery done by a doctor with much less experience than the one my doctor recommended. I called the surgeon’s office and told them I couldn’t afford to have him do the surgery. A few days later I got a phone call saying the surgeon had arranged for everyone involved in my surgery to except whatever my Insurance company would pay as he was considered as out of network. The surgeon, assisting surgeon, anesthesiologist, labs and even the hospital agreed.
I met the surgeon and his assistant the day before my surgery, they ran a few tests and found that I didn’t have an Acoustic Neuroma, I had a Facial Nerve Neuroma. After they explained everything to me and my husband we agreed to go ahead with the surgery. I was told the left side of my face would be paralyzed for 6 months then I would regain some use. I would be deaf in my left ear. My left eye wouldn’t tear but should over time. I was also told I couldn’t drink from a straw. Most of that came true except I could drink from a straw but sadly my eye never teared again.
A few days after I got home I threw myself a big old pity party! My husband had brought quite a few things home with us from the hospital that he thought I might want to use as I recovered. The clothes bag I put my clothes in before surgery, the water pitcher, the pan I threw up in, etc. While he and the boys were gone for the day I took a pair of scissors and cut up what I could and smashed everything else. I felt much better after that!
I too wondered if I should have chosen another surgeon and if perhaps I should have done more research and waited to have the surgery. Then I reminded myself that my doctor highly recommend the surgeon and that surgeon was so confident in his work and wanted the best for me that he did everything he could to make it happen.
I was so thankful that the surgeon had agreed to do my surgery for what my insurance would pay that I contacted my Insurance company to inform them that the surgeon they wanted me to go to wasn’t qualified to preform a Facial Nerve Tumor removal so they should pay everyone involved in my surgery as though they were in network. I received a call from my Insurance company saying they would be covering my surgery as in network and the lady said she would call me the following Monday to give me all the details. I didn’t hear from her on Monday so I called her and was told she no longer worked for the Insurance company. I hoped she wasn’t fired because she helped me. I didn’t pursue the case further.
Congratulations on fighting the Insurance company and winning it’s not easy, you should be proud of yourself for taking on the battle and winning! Not long after my surgery I started reading this board and responding on a regular basis. There were lots of people that posted a bit after their surgery then quit as they had very few issues after surgery. There were others like me that had lasting side affects and posted here frequently. We became friends that supported each other. I think you chose the right doctors as I read some of the posts on this site about Dr. Roland & Dr. Golfinos and they as you found out come highly recommended. As you mentioned, some cases are more complicated like yours and mine so I doubt that Freidman & Schwartz would have had better results. Freidman & Schwartz surely have had patients with issues after surgery but most prefer to talk about successes not complications.
My eye doesn’t fully close either and as I mentioned doesn’t tear, I can’t smile and I’m deaf on the left (most of my hearing was already gone before surgery). My balance wasn’t good either, I didn’t expect that. It was worse in unfamiliar places. Over time it’s gotten a lot better. I love riding a bike and was afraid to try it. I found that my fear affected my ability to ride more than my actual balance issues. I really, really wanted to ride again as I wasn’t driving so needed the feeling of the freedom to go where I wanted when I wanted. A few years after my surgery my husband and I rode our bikes on a beautiful paved trail, we rode 40 miles in one day! I still ride now and I just turned 66.
One of the things I liked about COVID was that since we all had to wear masks no one knew I couldn’t smile! It was up to everyone to do as I have for a long time, show people you are happy to see them and enjoy talking to them by the look in your eyes and what you say and do!
Thankfully after seeing 3 eye doctors the last one sent me to an eye doctor that helped me tremendously. My third eye doctor didn’t think she could help me but he didn’t know what else to do. I emailed her instead of wasting time with an appointment, she emailed back within 24 hours saying she could help me and she did. She fitted me with a Scleral lens (hard lens), it worked great for a while then my eye became irritated. My eye doctor then gave me a daily soft contact lens that is awesome and I’ve been using it for quite a few years now. If you would like to know more about it please let me know.
I started driving again, got a job and retired from there 4 years ago after working there for 24 years! Take Care, Jill
