Upcoming surgery for Acoustic neuroma: Sharing my story

@lynnrn hello and thank you for sharing your experience. My acoustic neuroma is considered small but my symptoms seem to be increasing. The Dr decided to wait 2 years between tests because there weren’t any changes but recently I’m feeling dizzy and more unbalanced with more ringing in my ears. I think I’m going to call the doctor after the holidays and move my appointment up, it isn’t scheduled until May.

I am happy to report that I am 19 days post-op from my surgery! By the time I had my surgery at the end of October, my acoustic neuroma was also considered medium/large. It had shown additional growth from my MRI in August, so it helped me feel more comfortable that I was making the correct decision to have it removed. I know how much I wanted to hear other's stories, so I will share all that I can remember!!

I arrived at Rochester the day prior to my surgery. I had four appointments that day and at the end of the day we spent a little time at the hospital just so that I knew where I was going the next day. On surgery day, I checked in at 6 AM. The next hour and a half was spent with several professionals coming in and out prepping me for surgery. Everyone was so very kind and helpful. I was wheeled into surgery around 8 and remained in surgery for about 12 hours. My husband was kept updated throughout the day and he and my sister each received a phone call from surgeons at the conclusion of the surgery. My surgery was considered very successful. They were able to remove 95-98% of the neuroma - it was fused very tightly to my facial nerve, and the surgeons did not want to risk facial paralysis by going any deeper.

I will be honest, I do not remember much about the first few days in the hospital. I did remain in the ICU a bit longer than expected because they saw a little swelling in my brain that they wanted to keep an eye on. My surgery was on a Thursday and I was moved out of ICU on Sunday. During the time in ICU they kept me very comfortable and did a daily CT or MRI to monitor things. I remember very little during this time, which is still strange to me. I do remember having some vision issues at first, sometimes when I would open my eyes things would seem sideways, etc, but this would adjust as I was more alert.

Once I was moved to an inpatient room, I began to be up a bit. The first few times of standing or taking steps were quite difficult. It was interesting because my brain knew what I should do, however my body just could not quite keep up. Steps were also another large challenge. I utilized a walker while in the hospital and also had one available at home for me to use for the first while as well. I mostly needed it for balance and support as I was quite unsteady and felt very weak. My neuroma was on my right side, so I was positioned in surgery on my left side for the entire day, and I would still say that my left side has a bit of soreness.

I was discharged on Tuesday morning and was very happy to be able to go home with my family. As I mentioned before, I had a walker at home for my use and also a shower chair. I took it very easy the first few days - some days I felt more energetic than others, but tried to be up and moving some to continue to work on my balance and stability. I have great support at home and a community who has been wonderful with providing the family with meals, which has been a huge help. Last week I began taking walks outside and have been up to 4 miles a day. It is slow and steady, but I am focussed on doing what I can. Some days I am not up to it as much, so I try to listen to my body. There are days I feel better than others, some days I feel more "cloudy" and some days I am just tired.

This weekend I had my first event - I watched my son play basketball. It was overwhelming seeing people, navigating through a crowd and adjusting to the noises, but I did it. I went home and took a nap, but I did it. I watched him play ball again tonight and felt that today went a bit better.

I currently do not have hearing in my right ear, rather hear a constant noise of air moving. It is not always very noticable, but when I am in a loud setting like the basketball tournament, the noise seemed to grow louder, as I am guessing my brain is trying to hear? My physicians have said that it could be a couple of weeks to determine more fully if any hearing will be present in the right ear. If not, I know that there will be options available to me, but we will let things settle down a bit. I have not begun driving again, as I feel that my reaction time is not quite what I would want it to be, but I know it will come.

I had my staples removed today, which was not nearly as bad as I thought it might be! I am glad to have that phase done as well.

I am sorry that this post was so lengthy - it is all very fresh to me, so I have lots to say! Also, from my point of view, I struggled to find much information prior to my surgery, so if there is anything that I can say or answer for someone I am more than willing to do so. I know that this is a very scary and overwhelming process and while not every day is easy, it does improve. Patience is so very important and I have learned that if someone offers to help, I take them up on it! I wish you the best with your upcoming surgery. The team I worked with at Mayo was wonderful - I am very thankful for them and the care they provided!

@lynnrn , I loved reading every word of this detailed post. It's so helpful for others to read this as they consider or wait for surgery.

Your surgery is now another couple more week behind you. Any update? How are you doing now?