It was in early 2014 when I moved to the Detroit, Michigan area for a new job! Shortly after arriving I noticed my hearing was failing in my right ear. I didn’t pay much attention to it at first. Until I was finding it hard to take telephone calls using my right ear. So, finally I visited an ENT (ear, nose, throat) doctor. After several tests and examinations, the doctor suggested an MRI just to rule things out.
Unfortunately, the MRI showed an acoustic neuroma This is a non-cancerous benign tumor that develops on the main nerve leading from the inner ear to the brain. This nerve directly affects balance and hearing. The tumor can also put pressure on nearby nerves controlling facial muscles and others.
Prior to this diagnosis (and over a number of years), I had been falling… a lot. I have always been a bit clumsy, but it seemed excessive. I told my doctor about it and she had suggested an MRI (and this was years before I was diagnosed in Michigan), but the insurance company did not approve it.
Fast forward to 2014 and I am diagnosed with an acoustic neuroma. After many tests, we found I had lost approximately 30% of the hearing in my right ear and 84% of the balance on that side, as well. This showed why I had been falling so much. After much thought and my own research, my doctor and I decided to go ahead with surgury to remove the tumor.
Living outside of Detroit, I was very close to the University of Michigan Hospital in Ann Arbor (go Blue!). My insurance covered it, so that is where my surgery would take place. I had an excellent Otolaryngologist, Neurosurgeon and on the day of my surgery, the Head of the Department of Anesthesiology would be monitoring the surgery. I was asked for permission to videotape the surgery for training purposes. The U of M Hospital is a teaching hospital after all. I did give permission.
The surgery took place in January, 2015. It was 9 hours and aftercare was almost a week in hospital. We had every reason to believe that the surgery would go well. There were risks, but my surgical team were sure I had nothing to worry about. During the surgery, the team checked the nerves and all seemed well.
Until I woke up. I don’t remember the first 24 hours. Coming out of the anesthesia was difficult. Some of the after effects of the tumor removal include temporary paralysis of the face, and muscles which close the eyelids. When I finally woke up, my doctor stopped by to see how I was doing. Unfortunately, I couldn’t hear anything in my right ear and my right eye would not close. The dryness was very painful. It felt like I was being stabbed in the eye. Honestly! For many weeks I had to sleep with an eye patch and also my eyelid was taped closed. I had some physical therapy to assist with balance and walking.
In addition to the hearing loss and eye dryness, I also experienced facial paralysis.The doctors were certain it would be temporary. It was a very obvious after affect and bothered me greatly. One good thing about the surgery, is I did not have to have my head shaved. It was just a small shave exactly where the incision would be made. Sorry, if this picture bothers you. But there I am with the staples in my head just before they were removed a couple days after surgery. I was sent home after 7 days, I think. Unfortunately, after recovering at home a couple of days, I fell, hit my head and I was back in the hospital for another 7 days. All good though.
I went to physical therapy for quite some time, including facial therapy to work on the paralysis. Unfortunately, the risks of this surgery were not favorable to me. I had permanent hearing loss in my right ear, facial paralysis and some balance issues. Physical therapy helped with the balance, and I just try to be careful (I know, I know. I am still to this day falling). An ENT doctor in the same hospital specialized in applying Botox to the face to help with the paralysis and to try to get some symmetry back. The difference between the left side and the right side of my face were very obvious. Looking in the mirror I didn’t recognize the person there. It was very tough.
The Botox did help, but it took some time. I would get anywhere between 20-30 shots in my face and neck every 3 months. This went on for 3.5 years. There is a long-term effect of Botox, unlike what most of us know as a “temporary cosmetic fix”. I do feel that after years of regular injections, my facial paralysis got better. Though it never went away. I still deal with it today. My smile is crooked, my mouth doesn’t move on one side. If I don’t want to drool when I drink something, I use a straw. I use eye drops every single day, mostly right before bedtime and as soon as I wake up.
It has taken many years for me to feel better about my physical appearance. Most people, a large majority, recover 100% after the surgery. This was not my experience. But I do thank God that I am mostly well today. I don’t try to have this tumor define me. I make concessions for my hearing loss (my left ear does have 100% hearing) and my balance is better. Walking regularly helps. I’ve been blessed in so many ways. This was a very difficult time in my life, that lasted a number of years. But I have come out the other side happy, healthy and looking forward to an amazing future.
“At the end of the day, we can endure much more than we think we can.” – Frida Kahlo
One response
Oh my friend and neighbor,
When I met you in late 2023, I never noticed anything amiss in your physical appearance. What I did notice was a warm, welcoming positive personality ready to try anything.
I’m sorry your recovery was painful and took years. A amazing person and example of fighting with every you have when faced with uncertainty.
Cheers to you and your kitty name Lola!