My Scoliosis Story

This is my scoliosis story everything from my diagnoses to my surgery, and recovery. Hope you enjoy.

Hey Guys!

I have scoliosis.

Scoliosis is abnormal curvature of the spine.

I was diagnosed with scoliosis in December of 2009 after  my x-rays were taken and closely analyzed. At the time the smallest curvature of my spine was 19 degrees and the larger curvature was just over 20 degrees. Shortly after the diagnoses I met up with Dr.B to start discussing back braces and other treatments. We decided and pursued a back brace. The process was long, but we finally went to another hospital for the creation of my new back brace which I would wear for 20 hours everyday for a year. (The purpose of a back brace is to slow down or hopefully stop the progression of the curvature of the spine.)

At the other hospital, they had me lie down on a table as they put plaster over my body to make a cast for my new back brace. I felt like a paper mashe project. They were very precise and careful, they applied pressure to the points they wanted the back brace to focus more on.( They use ''pressure'' points to keep the progression of the curvature from getting worse.) I was given the actual brace in July(2010), it was very uncomfortable to wear and difficult to move in, but I had faith that it would help. 

There was a miscommunication  and misunderstanding with at one of the meetings with Dr.B. Dr.B wanted us to make an appointment with her that September, to follow up on my progress with the brace and decide whether or not to continue wearing it. When we finally realized, and pursed to get into contact with her,her office was closed, and Christmas time was approaching. By the time we   tried to get into contact with her it was too late.I didn't end up seeing her until that February (2011). 

Shortly after, we found out that the brace had helped but since I had grown out of it, I had to pursue another one. That July, I got my new back brace despite my hesitation because of my frequent growth spurts. When I was given back brace #2 I had already grown out of it, but I still had to wear it 20 hours a day. It was both uncomfortable and difficult during the hot summer of 2011. I had trouble breathing with the back brace on because it wasn't my size and the heat made it worse. I decided to stop wearing it, despite protesting from others in my life. I would only wear it when I felt I should, not the length of time I was told to wear it.

 In February of 2012  I got x-rays done, saw Dr.B and told her all about it. She was not very happy,  and I was upset with what she told me. My curve had increased dramatically and she said it wasn't my fault. Later she told me my greatest fear, she told me that bracing would no longer be necessary and that I should seriously consider surgery. She gave me a referral to meet with the surgeon, Dr. Peterson. I was devastated. I met Dr.Peterson in March, we discussed the surgery, and we asked alot of questions. The surgeon was very kind and had a way about him that made you feel safe and secure. He had a very healing vibe about him. I was content with him, but I wanted to explore other options.

Later,I was given another appointment to tell him my decision and discuss it further. I looked into another surgeon that was farther away, but a family member had a successful surgery with him. Though I was content with Dr.Peterson I resisted to accept this as reality and tried to find every other treatment option available. At one of our meetings I told Dr. Peterson we were looking at other options he looked hurt. I hadn't realized or accepted that deep down I knew he was the surgeon for me if I were to say yes. I knew deep down that he was meant to do this surgery for me, I just didn't want to accept it. 

Later on, I was told I had until July (2012) to decide whether or not I was perusing surgery, I kept procrasting and avoiding thinking about it. I didn't want to make the decision. I had alot going on at home and in most aspects of  my life and I really didn't want to make this decision. Stress, anxiety and emotions were at a all time high, with school,exams,drama, and all the stress and drama back at home. When I finally got myself to a place to think about the surgery, it was extremely overwhelming and I couldn't think about it without breaking down. I had spent 3 years trying to prevent this as becoming a option and now it was my ONLY option besides waiting which wouldn't help anybody and would just make it worse.It was probably one of the hardest decisions ever put in front of me. I was terrified of everything about it, and that fear is what I kept avoiding facing. I was petrified, overwhelmed and completely stressed out. I finally made a decision last minute, I said 'yes'. My Mom immediately called the surgeon's office and told them my decision. This was a hard moment for me, I know I decided my own fate, but all the unknowns were terrifying.

I had another meeting with my surgeon in the fall of 2012, we discussed any other questions we had, but it was mostly him informing us on everything. Preparing for surgery, any type of surgery is a long and lengthy process I learned. 

I go back to the hospital again until my pre - op appointment a week before my surgery date in December of 2012. During this appointment I met with a Child Life Specialist who walked me through what surgery day would be like and eased my worries.We discussed my fears and worries. We had many questions for  her and wrote down everything that was said and discussed. Next, I saw a nurse who  checked my vitals, asked me questions and discussed  with us how to get prepared for surgery, what to bring, what to do, when to stop eating/drinking and when to be at the hospital. Then I met an anesthesiologist to discuss drugs and the anesthesia. 

The Days leading up to my surgery day were long,full of both fear and anxiety. But I stayed strong, I was determined that I was going to face this. No, it wasn't easy,even with my found strength I was afraid. But fear can be courage in disguise, sometimes that fear is what keeps you alive, sometimes fear is courage.

The Night before my surgery we drove up to the city where I would be having my surgery.My Mom, Dad and I got a room at a fancy hotel nearby the hospital.  My Mom and I had a rest from the long drive while waiting for Dad to meet us at the hotel. Then We got a phone call, it was Dad. He got a phone call from my surgeon saying that my surgery date could be 'bumped up' because of a limited number of rooms in ICU. We wouldn't find out if I was having the surgery until the morning. This was both disappointing and kind of aggravating if it weren't to happen, My Dad worked very hard to get my surgery date off and people at work were already trying to take his day off from him. This worried my Mom and My Dad we didn't know when we would be able to get another surgery date and Mom took alot of time off work for my recovery. Dad got to the hotel room and while we were waiting for him My Mom and I went swimming at the hotel(my last swim for many months). Dad came down to the pool while talking to my brother on his cell, sick at home with Grandma. He had been so sick Mom hadn't gotten a proper 'goodbye' before we left and she was heartbroken over it. It was very nice to hear from my brother and Grandmother and it rested some of Mom's worries. After we went swimming, we went out for a nice dinner and we had a fun,relaxing night. 

The morning of my surgery was a morning full of adrenaline, worry, anxiety and excitement. I was very excited, I didn't know why, but I was still very,very nervous. We quickly packed up everything at the hotel and loaded it into the car. Dad leaded the way to the hospital, as we drove threw the city I was jumping up and down in the car seat with excitement. I kept texting my boyfriend throughout the journey, despite that fact it was 6am and I had been up since 4am.

Fast foward 10 hours.

I am woken up from the anestetics. I remember being wheeled from the OR to my room in the ICU. It was about 5:30 pm, last time I had seen anything outside of the backs of my own eyelids was 8 am that morning. I missed my parents terribly and waking up nearby without them sucked. The nurses gently put IV's in and the stickers on my chest. When suddenly, I had the urge to burp, it was definately not a burp. There I am, fresh from the OR, lifting myself up from the bed and bending over the side to hurl. The nurses were astounded. They had never seen a scoliosis post op patient do that before!Shortly after this event the nurse allowed my parents in the room and talked all about it, all I remember is her saying '' you have a very strong girl here.'' As the aesthetics started to ware off, I was really funny and swearing like a trucker with my drugged up and tired body. Cracking everyone up with my quick witted remarks and jokes. A relief for my parents.Some things I wouldn't normally say because I have a governor but I didn't have one that night, which felt nice being able to say the first thing that came to mind or mouth...not always the best or nicest things, but it was different for me. Sadly this joking around didn't last too long when suddenly I started vomiting again. My Dad jumped across the room and got the blue bucket and caught the vomit before I got it all over myself -again. My Dad started to turn different colours with the revolting scent of the mix of vomit and biol in the bowl. I was having difficulty vomiting because of my sore sleepy body and the repositioned muscles had a hard time assisting my heaving. It was hard for my parents to see me this way, but I was still able to joke around. When I finally fell asleep last night, it was difficult to move to sleep on my side, to give my back a rest, and the sleep was uncomfortable with the sore muscles and sleepy body. Finally sleep greeted me, and I rested.

Day One after surgery was hard. I stayed in bed for the day with a morphine pump nearby and everything hurt but I didn't complain. Later that morning, Physio came by and got me up and put me in a chair which was hard and very painful.My stiff and sore body was hard to manover but with help I was able to get up and sit down in the chair. They told me it would help me regain my strength which as much as I protested that I later learned they were right. As much as it was a struggle to leave that bed  it was nice to get out of the hospital bed. I had only been in the ICU for the evening after surgery and part of the day when they decided that I was ready to leave the ICU. So early in the afternoon they came in with my new hospital bed and moved my Cadillac of a hospital bed against the other. They gently moved me and positioned a blanket underneath my body,which meant I'd have to roll side to side so they could get it underneath me. This was extremely painful, even with the help of the nurses it was one of the most painful things I experienced. Two nurses were on either side of me as they lifted the blanket from under me and carried me to the new hospital bed. The lift was one of the most painful things I've ever experienced. The feeling of gravity again was painful and uncomfortable even as they gently lifted me down into the new bed the move had been almost unbearable, but I didn't complain, I simply squinted my eyes and my face showed the pain my mouth wasn't speaking. Adjusting to the new room and atmosphere was a real change for me, new bed, new room, new nurses. The bed wasn't like the one I had grown used to, and I missed my old one, with my old room, and old nurses. But the nurses that were assigned to me at my ward during my stay were better than I could ever imagine.

Day Two 

 

I spent most of this day completely exhausted, with my blue puke bucket accompaining me. I hadn't eaten in over a day and the hunger pains and conspitation pains were at an all time high. I couldn't keep anything down, and my meds just happened to come when food was being delievered, so if I ate even a nibble or two it wouldn't last long. I started to get very frustrated with not being able to eat, and when I ate I threw up and even when I didn't eat I threw up. My conspitation pains worsened and became more intense than the back pain itself. Aw, and the hunger pain ate at my insides. But I didn't say a word about this, I did not complain.

Day Three

A hard day, everything started to get better,much better but other's seemed to get worse.The stomach pain was still there because of the conspitation and hunger pains. I was hungry, I was tired, I was feeling sick, lonely and down but I did not complain. Not until later that night when my emotions caught up to me, and I had a meltdown. 

Day Four

 This was a very awesome day! I walked the farthest I ever had with physio all by myself! No help!!!

After my nap I finally had some conspitation pain released and finally got to eat some decent food for the first time in DAYS!!!and then later, I got to get out of my hospital room for the first time. Being cooped up in that room started to really bother me. We went to an activity in the hospital, a craft. I was wheeled there by my new friend and volunteer at the hospital, Ellen and my Mom. I spent a while out and I was able to make and finish the craft before I started to feel drained. I was so happy to be out and I was so happy to return to my little room for a well deserved nap. :) The hospital staff and my mom were so happy and proud of me :) 

Day 5

Dec.23/12

This was an amazing day! I had a very relaxed day But when physio came I went for the longest walk she'd ever taken me on, and I climbed a bit of stairs for practiced. All of the staff were trying to prepare me for home, no one knew when I'd go home but we all hoped it would be before Christmas. <3 Then that night, my boyfriend and his family came to visit me. It was so great to finally see him and the wait was definately worth it! <3 My favourite moment was when he saw me stand for the first time, I rolled over to the side of the bed, sat up and lifted myself up and walked over and stood infront of him. His eyes lit up when he saw me stand for the first time,He couldn't help but smile at me. His face had this beautiful and priceless expression on it :) Later that evening he wheeled me in the wheelchair over to an event in the hospital. A girl who was a previous paitent had organized an even to do other paitents nails to give back to the hospital and the other paitents there! After a nice visit with all these paitents and getting my nails done we went back to my room and had supper. My boyfriend spoon-fed me like a baby aha since I had difficultly eating on my own. Then we cuddled on the hospital bed and watched AVP. Then suddenly, my doctor came in and gave us the news I WAS GOING HOME!!! What a beautiful and amazing moment to share with my mom,my boyfriend and his family! Who just happened to walk in when the doctor came with the news! It was such an amazing feeling to share. As my boyfriend and his family offered my mom support and hugs! Tears of happiness fell down everyone's face! They got to see my scar as my doctor and nurse replaced my dressing with a new one! :) It was an amazing moment in time! <3

Day 6

I went home! Oh the excitment and joy! :D So happy to finally go/be back home!

 

© 2013 Soul Fire

Author's Note

This is my scoliosis story, I wanted to share this with all of you. :)

Reviews

[Forever Hidden]

I'm relieved :P
Your very strong.
"I started swearing like a trucker" XDDD LOOOL NEARLY FELL OF MY SEAT THERE CF
i'M so sorry that you vomited and you had to grow through this though :/
Now it's done though, right?!
it was the past! :D
Move on with life ;)

[Soul Fire]

Thank you very much ahaha. and great advice. :) I just keep thinking about it at times, because there's not much I can do right now and I worry myself over the future in some moments.. but others I just shame myself because I can't do something anymore or for a period of time and I get frustrated because I can't bend over to pick up something and im so clumsy now and im aalways dropping stuff and just uggghh....it's very frustrating.. and everyones at school or busy or sick or studying for exams andd im stuck here, feeling forgotten and unimportant... other times i just get frustrated because just going for a walk tires me out and everything is just ughh... and it sucks and i hate it.. but i like my new body im just pisssed because i feel like everyones moving on with there lives without me. sorry for the rant

[Forever Hidden]

It's okay
And no ones going anywhere, I promise
I swear to god, when your there everyone loves you and stuff! When your not, people FORGET about you even when you've never forgotten them. .<
And heyy! Don't feel like that! I drop, fall, fall backward, fall frontward, all the time! i'm clumsy too! :)
Were HUMANS. We make mistakes.

[Soul Fire]

My pitful and small mistakes make me feel useless i cannot do anything properly..or the way i want to

[SmileBig :)]

Wow...I feel like I'm reliving my struggle..,the same things you mentioned pretty much happened to me. I got two braces, the braces didn't help that much so he said my worst fear; getting surgery. My parents decided to give me the surgery. The thing that's weird was I didn't have a pre op. see, my surgery was squeduled for the thirteenth of October. But, they had an opening. On July 23rd the doctor called. They had an opening the next day. And then July 24th I was on an operating table at 7 in the morning.

[Soul Fire]

Wow that is crazy. You are so strong for going through that

[SmileBig :)]

Yea...thanks. Ur strong too

[Soul Fire]

You're welcome :) and thank you :)

[Edward]

Stay strong soul your doing fine so I hear :)

[Soul Fire]

thank you :)