In several interviews, I’ve mentioned having brain surgery. In reality, I’ve had three. It’s been an interesting experience and many questions have been asked. I hope this answers some of them.
In July 2015, I got an ear infection. It was not the first one, nor would it be the last. But this one was different. After years of being told my ear was fine when I was in pain and felt like crap, I waited. Yes, I’d changed states and insurance and doctors, but years of being told what I was experiencing was wrong made me gunshy. It was hard for me to decide to make an appointment, because I didn’t want the doctor to tell me I was fine when I felt so awful… yet again. This time was different. I went in to see the doctor. My regular doctor was unavailable, so I took the appointment with whoever I could get. Really, the ear hurt that bad. She looked in my ear and paused. “Something looks structurally wrong with this ear.” Uhm…. ok. So I was given antibiotics for the infection that had already perforated my eardrum and a referral to an ENT. The perforation was not the structural problem. There was something else going on.
And so set in motion the next three years of my world.
The ENT told me that I had a cholesteatoma. It’s a fancy word for a tumor in my ear. Mine was right behind the eardrum and was larger than they normally found. About the size of a pea. Of course, I hadn’t bothered to get the ear looked at. Why would I? I kept hearing there was nothing wrong with me. The ENT sent me for a consult with a surgeon. Up until that point, I’d managed to get through life with only one surgery, practically unheard of for someone with Ehlers-Danlos Syndrome. I’d turned down a couple that were recommended, but hadn’t worked on my brother so I didn’t bother. This was different. This was my head.
The surgeon told me that the tumor had already managed to eat the small hearing bones in my right ear. They could remove the mass of cells, but it would affect my hearing. However, phase two would be to insert an artificial hearing bone and I should only lose a tiny bit of the hearing overall. Yay. Sort of. I wouldn’t die, which was the alternative if I decided not to have the surgery.
December 2015, I had surgery. Just before Christmas. Let’s talk about pain. OMG. So not my favourite thing. The surgery itself went well. The surgeon was hopeful that he had removed all the cells and the cholesteatoma would not have the opportunity to grow back. I was hopeful that I’d be able to move forward to phase two and get my hearing back.
Four months later, that was not the case. The cholesteatoma began to grow back. My mastoid bone was involved again. More loss of bone. In June 2016, I had surgery number two. I did better. Different anesthesiologist and a different knock-me-out cocktail. Recovery was still pretty painful, but it was easier. This time, for sure, they’d gotten it all.
Unfortunately, that was, again, not the case. There were two types of surgery I could have had. Both times, I opted for the smaller one. I no longer had that option. Surgery number three was scheduled for January 2017. Instead of a ‘simple’ mastoidectomy, I now had to have the mastoidectomy with canal wall down. I’d avoided that because it meant routine appointments to get my ear cleaned out every six months for the rest of my life. That meant I could NEVER go without medical insurance. I could NEVER go without a doctor. I was scared. This economy is not one in which I could guarantee that I would always have medical insurance and it’s terrifying to have to rely on that.
The third surgery worked, but I lost a great deal more hearing than they thought. See, with Ehlers-Danlos Syndrome, surgeries don’t work the way they ‘should’. We have complications related to the tricky nature of our connective tissue. One of my complications was Meniere’s Disease. It’s a vestibular condition characterized by vertigo attacks. I’m now even more sensitive to changes in the weather, as well as, wind. If wind flows passed my right ear, I get dizzy. I have to be careful of changes in light, noise, or low-light atmospheres. All of those things have the potential to make me sick. My hearing has gotten considerably worse as time has gone by. In fact, I had a moment the other day where I could ‘hear’ metallic scraping in my ear. It sounded like someone scrunching a metal Brillo pad deep inside my head. After that, the hearing is practically gone. But even the sound that makes it through my lack of hearing is wrong. The noise gets lost when my brain tries to make sense of the sound.
In October 2018, I finally quit my full time job. It wasn’t an easy decision, I liked my job, but the hours, the stress, and the need to drive around the state so often were all contributing factors. I focused on my writing and my son. It was wonderful to have the opportunity to spend so much time with him. I felt a lot like I blinked and he went from little boy to almost-adult. But a fledgling retirement account only goes so far. I went back to substituting in October 2019. I truly love teaching and the ability to work days when I am not sick and not work days when I am sick makes it the perfect job. There is a teacher shortage in Colorado. On average, there are forty substitute positions that do not get filled per day in my district alone. I make enough to cover my expenses (mostly), but don’t have to work more than I am now capable of working. My previous position was working for the state. Because state employees do not pay into social security, I am not eligible for disability, so substituting is my best option. Besides, like I said, I really love teaching.
Thankfully, I have amazing parents. My mom not only walked through the whole surgery thing with me, being there every step of the way, but she and my dad supported me financially when I could not. My mom has taken care of my son when I couldn’t. For a single mom, that is the most amazing gift there is. My dad has become my editor, reducing the flow of money that goes into creating a career in writing. I’m blessed to have them.
The point of this post is not to say “oh woe is me” but, instead, to share my story. Yes, this is challenging, but it’s so much better than leaving my son without a mother. It’s so much better than losing my life over a pea size mass of cells that had already started eating away the bone between my ear and my brain. The infection would have moved from my ear to my brain and my life would have been gone. I wrote this post in relation to several questions my readers had asked recently, but I’m glad I did, because I’ve learned how grateful I am for every day I wake up and get to breathe more air; for every day I get to see my son and every kiss on the forehead he gives me.
Lanie Goodell 