Upcoming surgery for Acoustic neuroma

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!

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!