Hi Guys,
I've been reading this forum for a month now, so I wanted to introduce myself and share my story. I technically didn't have an acoustic neuroma, but a jugular schwannoma. I was hoping you make an exception and accept an imposter to the group. I figured I'd share my experience and add it to the giant wealth of knowledge and information on this forum.
Nice to meet y'all. My name is Chris, I live in Chicago, IL and I'm 29 years old. I like to: work, record music, mix music, fix motorcycles, and ride motorcycles.
I started feeling spacey and off-balance in mid-late September this year. The dizziness felt like it might caused by an ear infection, but the symptoms weren't adding up. On 10/6 I drove home early from work because I felt very dizzy and tired. I got home and eventually ended up in the ER at St Marys Hospital because the balance issues became so bad I couldn't stand up and I was very nauseous. I stayed overnight, and eventually my balance was back to the point where I could stand again. The hospital was thorough and they did an MRI, which showed a 2.6cm tumor on the right side of my brain. The hospital neurologist said it was most likely a benign tumor and probably an acoustic neuroma, or meningioma, but the MRI was inconclusive as to where the tumor actually originated from. They also explained that based on the size, that I have had this tumor for 'years' without any symptoms. I was shocked of course. Until last month, I had a normal life with no symptoms. Strangely, I was also relieved that I had the MRI and was able to find the cause of my issues. I was eager to get rid of the tumor before we got acquainted with each other.
I took some time off work and started to meet with several specialists to get opinions about this. Everyone I talked to said basically the same thing: Given my age, the size, location and type of the tumor, surgery is the best option- sooner rather than later. By 10/18 I was confident I had done enough research and found the right Dr's, so I set the date of 10/26 for retrosigmoid surgery with Dr Wiet and Dr Kazan in Hinsdale, IL. I was nervous, but I couldn't wait for the day of the surgery to finally come.
From 10/20 to 10/24 I started getting noticeable hearing loss and ringing in my right ear. The tumor knew its days were numbered, so it was getting in one last taunt. By the time I went in to have surgery I was feeling normal and symptom free. It was weird going in for brain surgery when I felt perfectly healthy!
Surgery was between 6 and 7 hours. A couple hours after surgery I was able to talk to some family and close friends in the ICU, smile and crack some jokes, and I just remember feeling relieved that it was over with. The doctors told me the surgery was a success, meaning they think they got the whole tumor out and and they think they preserved all my nerves.
They also said the tumor was NOT an acoustic neuroma, but a jugular schwannoma, and was larger than the MRI had shown earlier that month. The tumor had been wrapped up in several of my cranial nerves, and also pressing up against my brainstem. The doctors said the tumor was more serious and threatening than the MRI had originally made it look. Good thing we took care of it!
The next few days I had trouble swallowing food and water, so I was pretty much just getting IV fluids. I did swallowing exercises until I could eat sherbet and drink protein shakes. Now I can eat and drink pretty much anything, just slowly. Once I was able to eat, they let me out of the hospital.
My voice continues to be pretty weak and hoarse, but seems to get slightly better as the weeks go on. The doctors tell me to be patient with this, but patience isn't something I'm very good at. I also have a chronic cough which seems to be related to my swallowing weakness. Coughing is not fun after you've had a hole cut in your head. I notice that when I lay down, the cough goes away completely within a few minutes. The doctors assure me that all this should get better over time.
I still have hearing in both ears. Neither are 100% right now. My right (tumor side) ear is popping a lot right now and feels like 85-90% hearing is there. My left (non tumor side) ear has had mild tinnitus since surgery and the hearing actually seems a little worse than my right ear! How could this be? I think it might be sinus swelling/fluids from the surgery. Anyways, its probably too soon to say, so I am interested to see what happens as time goes on.
My balance and facial functions are both close to 100%. I can drive a car and ride a motorcycle just fine, but I have been keeping those to a minimum and try to rest instead. I have a lot to be thankful for. So far I haven't had any issues at my job or issues with my insurance, which makes it easy to focus on the more important issues. I'm glad I did not go though this alone, but with the support of many great people. My family and my girlfriend have really stepped up their support for me, and made this a positive experience.
I look forward to talking to you guys more!
