I am 1 year and 2 months Post Op and just heard from the doctor that my follow up MRI was clean. I have not discussed my AN, surgery and recovery with people much as I feel like it isn't an easy thing to talk about and I'm not sure what the benefit would be for me or others. However, after having gone through the whole experience I wanted to share a bit in hopes of being an encouragement to others.
I was diagnosed in Dec. 2012 at the age of 40 and had a golf ball size tumor that was touching but not majorly pressuring my brain stem and was wrapped around my audio and facial nerves. I live in Colorado and my wife knows a lot of doctors and asked one of the best ENT doctors in the area what he would do. He recommended the House Ear Clinic. I had to see a neurologist in CO first but decided to go to House because it sounded like they were one of the best and they were great and I can't thank Dr. Slattery enough.
After much research on my part and several discussions with Dr. Slattery we decided on the TransLab surgical approach. I had lost much of my hearing in the left ear already and would like lose the rest shortly so it seemed the smartest to me to forgo my hearing in hopes of saving my face and facial nerve. I did go back and forth but eventually stayed with the TransLab approach. This approach gives the surgeons the best approach and visibility but guarantees deafness in that ear. I did tell Dr. S to err on the side of saving the facial nerve and leaving some of the tumor if he had to.
I am a Christian and believe in God and I have to say that this was both a difficult but growing time in our relationship. I did a lot of praying as well as arguing with God. Of course I went through all of the "Why me" questions and such but I knew that God was in control and that he was allowing this for some reason.
I personally tried to just act like everything was fine and that it was just a simple surgery so I wouldn't let myself fully appreciate how scary and overwhelming it all was. That worked pretty well until it got close to surgery time and I started freaking out and getting very scared. I didn't want to die or lose my face. I don't think I really felt it all until I was on the table in surgery prep getting the anisthesia. My wife and I had a big cry. Not sure who was the most scared at that point. Then they sent her out and rolled me over to the OR, things got fuzzy and then I woke up feeling like death.
But I woke up. All of my senses were in hyper drive so I was extremely sensitive to noise and light. But the doctors said it all went well and that my facial nerve was ok, thank God, and that they got all of the tumor. It was hard to do anything right after the surgery. I couldn't take noise or light. They had the phone on in my room and I think I may have thrown it down when it rant but definitely asked them to remove it and couldn't hear cell phones ringing either. It was really difficult to even move much less walk. My balance was almost non-existent and my head would spin. It was very difficult but I was intent on getting out of the hospital as soon as I could and that meant a day earlier than scheduled so I worked as hard at the walking and such as possible. So I was able to leave the hospital on Fri. after surgery on Tues. That was a major blessing. Not nearly as much as my face being completely protected, but very good.
Until I took a bite of the In-N-Out burger that we stopped to get. It's very depressing when something that normally taste like heaven tasted awful. I was really bummed at how awful food tasted. Almost everything on my left side tasted like I was eating chapstick. This lasted for months but eventually went away.
I took the pain pills while in the hospital as I needed them but I couldn't take the really strong ones as they make me nauseous. But I think I went to alternating Tylenol and Ibuprofen within a day or two out of the hospital. My face and head were swollen and I had a massive bandage but I wore a hat and did like 3 long walks a day with my wife. These were great to help me with my balance and to get me back to feeling almost human again. I did a lot of the postop excercises to help with balance and I think they did help. I probably didn't do those as long as I should have but I did do them for a few weeks.
I got on my road bike to ride a few weeks after the surgery and realized quickly how bad my balance was when I kept falling when I looked backwards. But I rode and tried to do as much as I could physically to feel better and pressure my balance into acclimating. I went snowboarding in the winter and it took some adjusting but I did it and am back playing in the community sand volleyball league.
I'm definitely deaf in my left ear but that's not so bad when sleeping or when the kids are arguing. But I will say that the Phonak hearing aids that I got are pretty amazing. I'm a bit vain so I wasn't going to get hearing aids but saw these ones and they are tiny and the one transmits the sound wirelessly to the one in my good ear so they work pretty well and can hardly be seen. Definitely worth looking into.
I'm am back and in better shape than in years and doing pretty much the same or more than I did before. I would never have chosen an AN but I think that you can get through it and be stronger for it. I feel like I am and hope that you will be as well.
I hope this post can help at least one person. Feel free to email me if you have any questions.
j
