Finding the right words

One year and a day ago, I woke up at 4 a.m. to ready myself for surgery. As I showered with the strange antibiotic soap I was required to use, I thought once again about the day ahead.

I was apprehensive, but resigned. I needed to get this done.

My husband and my son Chris drove me to the hospital less than an hour later, and Chris said goodbye in the parking ramp. This was May 19, 2021, and Aurora St. Luke’s Hospital in Milwaukee was in COVID lockdown. Only Jeff was able to sit in the pre-op room with me until they filled me with calming drugs and wheeled me away.

About 5 ½ hours later, I was able to see them once again – separately – and assure them that I was me and I was OK.

The first thing I remembered when I was being wheeled from recovery into my Neuro ICU room was them asking me my name. I said “I’m still Penny Mullins.”

Why was this important, you may ask? Because my two wonderful and extremely talented surgeons had opened up my head, lifted and repaired the dura layer on my brain, cleaned and cemented a hole in the bone between my brain and left ear canal, and put Humpty Dumpty back together again.

It was a 4 ½ hour surgery, with my ENT neurological surgeon working from the bottom and my neurological surgeon working from the top. Dr. Aaron Benson and Dr. Glen Pollock had performed this surgery many times together, but it was all new to me.

What started in 2018 as persistent fluid in my left ear, which was blocking my hearing, ended up with an ear tube being inserted in April 2019. I had immediate results as the fluid started draining – I could hear again!!!

But the draining never stopped. For almost three months, my ear leaked a clear fluid. It eventually got infected and I had to use drops that felt like Drano going through my ear down my throat. It was time to take the tube out.

My ear immediately became blocked, and I dealt with it … for the rest of 2019 and into early 2020, when COVID shutdown changed our world. I wasn’t able to see my ENT, even if I wanted to. 

Feb. 2, 2021, I had a regular check-up with my doctor and told her about my loss of hearing and tinnitus. She set up a visit with my ENT.

My hearing was tested and my ear was scoped and I talked with my ENT about another tube, but he wanted to take a look at my ear with a CT.

The news was bad. It looked like there was a hole in the bone between my middle ear and my brain. He ordered an MRI.

That news was worse. There were several holes, which allowed cerebral spinal fluid to leak into my ear – hence the clear fluid that had been draining in 2019. Once the tube had been removed, the fluid continued to leak and was trapped in my ear canal.

But there was more – a portion of my brain had dropped down into that hole. Whatever dropped down was now dead, I was told. I needed to have surgery as soon as possible to clean up my ear and brain and repair the hole.

ASAP has a different meaning when you are not considered an emergent medical case. My first appointment with Dr. Benson would be April 21, which was 34 days after my MRI. My surgery was scheduled for May 19, which was almost one month later – and that’s only because Benson and Pollock shifted their schedules.

I had a lot of time to think. I was going to have a craniotomy – a Middle Crania Fossa Approach to Repair a Tegmen Defect. I had already lost brain tissue, from a part of my brain that deals with words. I was told the surgical risks included possible stroke, nerve damage to my taste, sight or facial nerves, infection or death. The doctors really didn’t know if the defect was caused by one of the three concussions I suffered in my life or I was just born with it.

I had a lot on my injured mind.

I was 65 years old. Suddenly, I was seeing the word “elderly” in my medical reports. I had let my hair go gray after I retired in February 2020, and I was now a gray-haired, overweight senior citizen. How did that happen??!!! I was facing a medical crisis that already had changed my description – was it now going to change my personality, my facial muscles, my ability to do the things I love doing?

Or could I die? 

I prepared by cleaning a lot. I worked my ass off in the greenhouse getting ready for the weeks that followed my surgery, when I would have limited mobility. I didn’t know how long I would be unable to work the way I wanted to. 

I made a list of where everything (financial) was kept. I paid bills in advance. I trained my sister Joy and daughter Kati how to run the greenhouse, as May is our busiest month. I gave the password to my phone and iPad to my husband and my best friend in case they needed to have access to all the things stored there. They never needed those numbers, but I had to be sure.

I didn’t tell a lot of people about my upcoming surgery. I let my mom, sisters and brother and my sisters-in-law know; I told my closest friends and swore them to secrecy. I did not ask for prayers on social media, either before or after.

But I was preparing myself for a future that held plenty of unknowns. It opened my eyes to all the people in my life who were facing their own personal crises. And there are many – as Jeff and I are firmly immersed in the Baby Boomer Generation. We have many friends and family members who are dealing with medical changes and losses in their lives.

My surgery went very well – did I mention I had very good surgeons! I was told the hole was bigger than they expected even though I had about 4 CTs and 2 MRIs in advance. Not a problem, they just used more cement and sutures.

I was told to expect to be in the Neuro ICU for about five days, but two days after surgery, they sent me home. I was a model patient, they said, hitting all of the benchmarks they set well before expected. I have to say I had the best nurses caring for me there – they were caring and warm and I felt I had quality care. Other than going home without painkillers (which I really needed, but “someone” (the hospitalist) felt I didn’t need) – I did pretty well. I had a huge line of stitches from above my left ear close to the temple and below the fold of my ear.

I have recovered almost fully. The pain from the docs cutting through my jaw muscle healed well, and the scar is almost invisible. I can hear almost perfectly in that ear, and I am not losing new words – although I might have permanently lost some prior to surgery.

Other than the hearing loss, my only symptoms were occasional spells of a racing heart and temporary aphasia, where speaking and listening to others took on an other-worldly aura. My heart would race and my blood pressure would spike, but a monitor showed no reason to blame my heart. Turns out that having a cerebral spinal fluid leak and brain matter falling through a hole can cause those episodes. Who knew? There haven’t been any incidents since the surgery.

If my only complaint is that my sense of taste was compromised and hasn’t fully returned, I’m OK with that. I am alive, I am Penny, and I am glad to be here. 

I am also grateful for the love and support of my family and friends – because I know I couldn’t have done it without them.

Now, I just need to work on that “aging gracefully” and being a “senior citizen” thing.

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