Spinal Fusion | 20 Years Later

Hello!

In the last several years a lot has happened, I celebrated 10 years as a blogger in 2019, I hit two milestones in last year, starting with my blog turning 10 in October and I entered my “dirty thirties” a month later. For this year, there is a very different anniversary, and I’ve felt weird about it for months. I actually decided to allow myself to write about my thoughts months in advance because I couldn’t get it out of my mind of how it’s been this long since it happened, so I hope you enjoy taking a trip down memory lane today.

I was technically born with three conditions, as you may know I have Arthrogryposis Multiplex Congentia, but this can lead to other problems like babies born with club feet. scoliosis, etc. I happen to have a serve case of AMC with the addition of a club foot, rocker bottom, and scoliosis. I’ve had many, many physical therapies over the years, in the hopes of trying to help make life a little easier. I’ve had discussions about what could be done as far as surgeries go to “fix” my arms and feet, but the only I ever had been the full spinal fusion surgeries in 2002.

Photo by cottonbro on Pexels.com

What is spinal fusion?

Spinal fusion surgery is usually the last option, if your back cannot be corrected after wearing braces for multiple years. The National Spine Health Foundations says, it is like trying to fix a broken bone(s), which is a great way on how to explain it, especially in my experience. What does one do in the hopes of repairing a deformed bone? You have two options: use a splint or form a brace/cast and hope time will heal all wounds… Nice pun action there, right?

I wasn’t a stranger to braces; we still have the itty-bitty braces doctors gave us for my hands. When I came out of the womb, my arms weren’t set in the position at my chest. According to my mother, they were somewhat flat, and the doctors tried to adjust them twice. The first was when I was in incubator, (I was a preemie, so I needed a little help breathing and then of course figuring what was going on with my body.) and the nurses made a makeshift log by folding a single wash cloth and propped me on top of it so my arms would stretched out and eventually my parents were given the braces for my forearms and they a little smaller compared to a standard remote for your TV!

Anyways, I was about five or six years when I was put into the first brace I actually remember. I don’t exactly remember the appointment itself but It had many crooks and crannies, plus it was very decorated with stickers, thanks to my fellow classmates adding a bit of fun to the whole thing! I wore it until the end of third grade and just before I turned 10, I was fitted with a brand-new brace and it was very bulky, this was as close to a corset as I could get, and thankfully I only had to wear it for less than a year because it wasn’t doing very much to help me at this point.

I remember the night before we drove up to Shriner’s Hospital in St. Louis, my mom had my sister and I and we prayed together if it was decided by the doctors I would have surgery, I remembered our expressions being of fear and shock, I mean we were kids, despite the fact we’d go over there multiple times a year since I was about two years old, somehow I hadn’t heard that word “surgery” before, so it was no wonder why I can remember that scene so well because it was a new thing to me, and I didn’t fully understand that whole process until much later in life.

The actual appointment is still hilarious to me because after getting X-Rays done five minutes earlier, the four of us were called next and put into the standard size room with a very used chalk board and different toys attached to the wall next to the giant mirror. Our parents were wrecked with nerves, Blondie was playing, and I was on the cold floor slowly peeking out into the hallway, watching everybody walk around, which is something I still do at age 30, but I noticed there were a lot of doctors looking at a set of X-Rays and I saw my doctor among them. I knew at that moment they were inspecting my images and as I was told to scoot back in the room, I didn’t feel scared but curious of the language they were discussing–I knew something big was coming and it fascinated me!

As I made my way back over to my folks, they suspected the doctor would be coming soon, so one of them lifted me onto that damn bed thingy and I sat there for a short time before they came into the room. How do you know you’re going to have surgery? Well, in my case, about 7 doctors walked right in and they were the same 7 people busy talking in low tones about the process of my spine. There were tears and I cracked a couple of jokes, because that’s how I roll in life. The day we went up there for this appointment had to been in mid-April 2002, because by the start of August, and what would be the beginning of my 5th grade school year, we made another trip which would be even longer as I was now an inpatient on the second, B floor with a roommate by the name of Shelby.

My mom and I tend to argue about the exact date we went up and stayed at the hotel and eventually moved into the hospital to stay. The first night in that hospital was another hilarious experience! I couldn’t get to sleep, because the next day would start on my three-and-half-month journey. We got yelled at by one of the night nurses that the TV wasn’t allowed on at night. This is definitely something you don’t tell a new patient, but we followed the rules, and after my mom went to bed, I decided to play with the controls of my bed, and I had that thing folded up like a taco! I think my mom woke up in the middle of my fun and told me off, because I don’t remember much after that!

The next day, Dr. Lawrence Lenke only came to the hospital on Tuesdays and Thursdays as he spent the majority of the time at the Children’s Hospital a few miles into the city, where I would end going for the second and third surgeries. The first was a smaller one but the one we can somewhat pinpoint the easiest, which is why I tend to celebrate them on this one date, as supposed to the day we left in early November. This surgery was just as important as the doctor and his nurses and techs fitted a half halo made of metal onto my skull. I had eight pins screwed into sections to keep it secured and I was attached to a pole in both my bed and wheelchair to keep myself alignment. I ended up having three surgeries altogether, but I wouldn’t have the actual spinal fusion surgery six days after my 11th birthday.

Over the years, I’ve finally figured out the timeline of everything that happened, both while I was in surgery and recovery, and what was going on at home and school too. My mom and I were separated from our support systems. My dad stayed home to work and stay with my younger sister, she actually doesn’t have a lot of memories of that time, whereas I remember almost everything. I had tons of distractions between school, friends that stayed in our section, the goofy nurses and field trips. I went on more field trips in three months than I did in one year!

A little after I had my first surgery, I got to meet some of St. Louis Cardinal baseball players. My dad was very excited, he thoroughly enjoyed this! I think this and the time a group of motorcyclists came to visit us and brought us goodies. Anyways, I’m not into baseball so I sort of felt silly meeting these guys, but the Cardinals team is a big supporter of Shriner’s Hospital, and visit the kids, and sometimes a group of kids, nurses and people in the RT (recreational therapy) go to watch a game and meet the entire team(s) and I am thrilled they do this. We met with a great bunch of guys, and it was really fun, but I highly doubt Woody Williams still has my autograph but hey you never know! He was very curious of my ability to write with my feet, so we did a trade, he signed my shirt, and I gave him my autograph.

From L to R we have Timo Martinez, Andy Benes (he retired later in the 2002 season!), Mike DiFelice and Woody Williams. Notice the metal halo on the top of my head, and the pole behind my wheelchair. Photo credit: Dona Glambert aka my nana!

It is absolutely crazy that it’s been over 20 years since I had my first surgery, the other two anniversaries will be at the end of October and first week of November.

I could sit here and tell you all of the things that happened, but it would be even longer than it is now, so I am going to stop here for now. If you would like to ask any question about my experiences; while I was staying at Shriner’s, recovering, or anything else, you can email me at gotmeghan.blog@gmail.com Be sure to get the dot in between “gotmeghan” and “blog” before you send your messages! I’d also like to say if you know someone who was a nurse at that hospital, worked in the B section, and remembers anything about the girl who drove her wheelchair with her feet, I’d also like to get in touch with you/them too!

Have you ever had surgery before? What was the location and reason why you needed to have it in the first place? Leave your answers below!

snowflake

A-Z Disability Challenge | M : Do You Think You Take Too Much Medication?

This is an interesting post for me because I am very self-cautious about any kind of medication, whether it’s for depression or general pain, I am always afraid that I will become dependent of it. My mom tells me all the time that I am not, but that doesn’t necessarily help my paranoia. If I could get by with taking only Advil I would probably be the happiest, but unfortunately that doesn’t help with the muscle spasms or the really intense pain that it can cause in certain places. So, I am stuck in this mental battle of knowing I am fine with my intake but my brain doesn’t allow me to believe so.

My brilliant papaw was a Pharmacist, he went to school for it and afterwards went into the Korean war, but instead of seeing any action, he was sent to Hawaii to work with the doctors on hand. We were told lots of stories about his time there like how the fresh pineapple tastes better than it does at the store and every once in a while he would tick nana off with bragging on how he had a girlfriend there. Honestly we never really trusted him with that piece of information.

My papaw was one of the smartest people I knew, but he unfortunately had issues with pain, and one of the saddest things about this was the amount of pills and empty bottles he would have stashed around the house because he went back and forth thinking that he wouldn’t have enough or people would steal them. You really feel sorry when an older man feels the need to secretly hide medicine for either reason, because if they are anything like my papaw that after discovering three to four bottles of a random amount of pills in each one, having to be monitored by not only their wife but also their daughter who is a nurse, is very heartbreaking! I know that he absolutely hated that, but he had the last laugh because after he passed away, we continued to find bottles up until the house was sold!

There has been a lot of news about doctors and manufacturers being sued for all of the opioid addicts out there, and I am not sorry for this but instead of putting the blame on the doctors, how about you put it on the addicts. It was their choice to use it to not only harm themselves but cause many issues for patients that do not abuse their medication. My dad is one of those people, he has been on a different set of medicine recently for reasons unknown by his doctor and since then he’s actually been in more pain than I think he’s ever been in his life. He has other ailments that are causing him more trouble as he gets older and it sucks to see such a person want to be in bed or on the couch with various amounts of pillows than outside doing stuff. This mess that has finally come to life has really horrible effects for both sides.

Before I end this post, I would like to say that these are my opinions. If you are an addict or have a family member/best friend that has dealt with addictions over the years, I am sorry for you, but I truly believe that most of the general blame is on the wrong people. Let’s make this clear though, there are crooked physicians out there but some of them are desperately trying to help their patients and if they know them well enough that they understand that they’d never want to jeopardize their medication for a temporary high.

So, have you ever felt like you take too much medicine just to get through? It doesn’t matter if it’s mild or intense amount of pain either. What are your thoughts of the opioid epidemic?