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

Dog Lover

I am a Husky/Wolf lover. I’ve always had a thing for them since I was little. I’m not afraid to admit I have four or five Husky stuffed animals, this just ended up being the closest to me. Not like, my favorite but reachable. I love all of them the same. This one is the softest of all of them. I have two beanie baby Huskies and weird part is I got them at the same place, just different years.

My first was medium size stuffed animal. Our first time going up to Shriner’s and actually staying up there for more than a day was the day where I saw my first Husky toy. At Shriner’s there’s a place with offices on your way down to the elevators. They had a line of stuffed animals on the floor by the window. The second one was the Husky dog toy. I was happy but sad because I wasn’t allowed to have it.

After awhile at Shriner’s, my mom or dad told one of my favorite day nurses I had a thing for Huskies. She brought in a picture of her Husky, she let me keep the picture and we taped it on my foot pedal so I could always see it. I have that picture somewhere, no telling where it is though. I think around September or October I got a very interesting surprise from this nurse. Remember that stuffed animal I wasn’t allowed to have, well I told her about it and the next thing I knew it was mine. That’s one way to become a favorite.

A few years ago, probably either after or before I had my surgeries my family became babysitters almost. My dad’s friend had a husky mix and a wolf and they had pups. Dad’s friend said the female wouldn’t let them feed or something like that. So we ended up having close to maybe 12 or 16 pups in our kitchen. My sister and I were in LOVE with these little things. We all had favorites and we didn’t want to give them back to be sold. But we had to. A year later, dad’s friend came back to the house. Brought one of the grown up pups to the house. Emily and I had fun playing with such a big dog. Even though we were used to big dogs for some odd reason this one stumbed us.

After we moved into the house we live at now. Dad’s friend came over with a surprise for us. A puppy. I don’t really remember where Emily was but I had the puppy and he just loved me and I loved him back. Even after he peed on my bed. I still loved him. I didn’t want this one to leave at all. He had already fallen asleep on me twice and I just fell in love with it. Dad’s friend was just about to leave and I knew dad wasn’t ready for another dog yet. I bawled my eyes out and wasn’t happy about giving the puppy back because when I started crying it was like it didn’t want to leave either. He put his cute little head on my neck and rested it there. Then when somebody lifted him up he gave me a kiss. I still want that puppy even though I know it’s probably a giant now.

That One Nurse.

Recently I’ve been eating Rice Krispie Treats, and this morning my dad gave me one of the regalur and a chocolate one. The original is always better, but I can’t turn down chocolate in the morning. Today felt like I was back at Shriner’s waking up early to get to the PlayStation before all the boys got to it first. That’s how clever I was when I was younger.

Anyways, when I was just starting to get up early to do this. I would get up around 6 or 7am. Sometimes even 5am. It depended on how many hours of sleep I got the night before. I had to be very sneaky and so did the nurses because I wanted to play Mario Brothers. Around 7am the cafetria ladies would come up from the first floor to deliver to our rooms. I was really over having eggs and cheese in the morning. I don’t hardly eat eggs now. I didn’t even want fruit cocktail in the mornings.

Well one morning, one of the nurses was talking to me about how she eats Rice Krispie Treats before she comes into work to get some more energy. I don’t normally eat marshmallows. I don’t even like Rocky Road ice cream because I know there’s marshmallows in it. Something about a Rice Krispie Treat in the morning made me think, “Meghan, it has desert treat. Go for it.” I did. Haven’t regretted it yet. It’s been 9 years since I’ve been at Shriner’s having a surgery. Went to my checkup that has been in the progress for 7 years. It’s been a week since we went up there and I still find little things that keep reminding me of those crazy days there. I miss it sometimes, but at least I have memories.