Tweet
Hi, Im new
Hello all, my name is Stephen and I am 18 years of age. I live in central Florida and I have severe scoliosis. I really hate having scoliosis especially in public places but I do not let it stop me (took drama 1 in highschool). I feel kinda funny because I really dont know all the details about my scoliosis. I usually just grin and bare during doctor visits and I never let anything bother me. I have had 6 surgeries in my life time and I would like to tell you how it happened.
At the age of 3 I started having stomach aches and then one day my legs gave out on me and I could not walk. My parents took me to the doctors and they found a very large tumor inside my spine. The doctor my parents took me to said it was like a time bomb waiting to explode inside of me. He told my dad that he should not let me walk/run/play because if I did this thing would surely explode (by that time i was able to walk again). My dad was a nervous wreck and he went out of his mind because he carried me on his shoulder for at least a week. Finally we went to gainsville and saw a doctor Mickle. Doctor Mickle saw me and said let me see you run and my dad was like are you crazy, the doctor in central florida said if he runs the tumor would explode. Doctor Mickle laughed and said what are you talking about, hes a little kid and this tumor wont do anything to him. Later I had my first surgery to remove the tumor and then the scoliosis began because the tumor was removed.
As I grew older I had a normal life but I always had a brace to go along with me. It was great that I had my brace at such an early age because all the kids thought it was the neatest thing. Whenever they would ask what it was for, I would say that I was shot and it holds me together, or I would say its a bullet proof vest. But as I started to grow more my scoliosis got much worse and at the age of 10 it was time for my second major operation. During the second surgery, they placed an *adult* rod in me, because something happened to the childrens rod and I had a spinal fusion done on me. The adult rod was Horrendous and stuck out the top of my back like an inch. I showed my friends and they occassionally would peak down my shirt and be like cool! But I always hated it. I especially hated the whole growing thing because when I was younger my back was normal looking but as I grew it was like my torso just became mangled.
I continued to the 6th grade then 7th and 8th and 9th and 10th until my spine refused to stop growing. My rod was just not doing the job and I needed a whole set of surgeries to stop the curving. I was not a tall guy at the time, I was about 5'3 or 5'4 and I was very skinny with long legs. But back to the surgeries. The plan was to have 3 surgeries. The first was to take out my first rod and *de*fuse my old spinal fusion. The second surgery was where they put steel rods through my Knees, and then attached a halo to my head (ring drilled into my head). They then tried to stretch out my spine by attaching weights to my head and legs for TWO whole weeks. It was the most painful experience I ever had but I never complained one bit. After the two weeks they then tried to realign my spine the best they could and attach 2 more steel rods in my back and refuse my spine. Unfourtunatly my spine is so curved that they couldnt straighten it out very much. After the 1.5 months in the hospital I ended up growing a good 3 to 4 inches. I thought it was halarious cause it was like they did some type of medeval torcher bed on me. Anyhow I took my Junior year off and had a tutor come to my house and teach me.
I continued my life into my Senior year which I attended a technology school in Daytona beach Florida. It was great fun and I enjoyed my year. I was not a popular kid but I had my friends and I managed to never get fun of all my highschool years. Right after the last day of school my body just gave up though and I started having problems walking. Then I was not able to urinated and I was scared sh!tless. I took it like a man and was catherised for a good 5 weeks. Lol my bag did get a hole in it eventually and we had a ball trying to figure out how to ziplock the damn thing up. It was funny and I never realized how awful piss smells. Anyhow... It had to be one of the worst situations in my life because the ability to not pee is probably the most painful thing in the world. I went to the neurosurgeon and they said they found a syrinx. Supposidly a syrinx is fluid in the spine so they decided to go and operate on me for the 6th time. Horribly it was not a syrinx they saw, it was tumor and they were not prepared so they managed to get only a tiny portion of it out. Thank god though it was enough to relieve me and let me walk and pee again. I still dont understand but I thank god every time I take a leak
.
Anyhow after the surgery my parents insisted I go to physical therapy and get my strength back up. Now I am a weight lifting freak and I am trying to build my body up. I continued my training and joined the gym membership where I was receiving physical therapy. I now drink Prolab N-large 2 protein weight gainer, creatine, and other supplements. I have already gained 8-10 lbs (im very skinny 112 lbs atm) and I am really excited because my chest which use to look extremely weak has some definition to it. I hope to keep working out so my back and chest doesnt look so akward. Working out has to be the best thing I have done to my self-confidence and it might be an option for you people that need a boost. Anyhow I really hate scoliosis but I am proud that I went through 6 surgeries without one ounce of fear. Its funny actually, I think of it as surgery is no biggy Im not gonna be doing any of the work, the doctor is. All you have to do is be a good sport and do it because in the end it will save you a lot of pain.
PS
I am sorry for such a long post, but I feel there is so much to my life story I needed to share. I am going to read over it and see how many mistakes I have made lol.
At the age of 3 I started having stomach aches and then one day my legs gave out on me and I could not walk. My parents took me to the doctors and they found a very large tumor inside my spine. The doctor my parents took me to said it was like a time bomb waiting to explode inside of me. He told my dad that he should not let me walk/run/play because if I did this thing would surely explode (by that time i was able to walk again). My dad was a nervous wreck and he went out of his mind because he carried me on his shoulder for at least a week. Finally we went to gainsville and saw a doctor Mickle. Doctor Mickle saw me and said let me see you run and my dad was like are you crazy, the doctor in central florida said if he runs the tumor would explode. Doctor Mickle laughed and said what are you talking about, hes a little kid and this tumor wont do anything to him. Later I had my first surgery to remove the tumor and then the scoliosis began because the tumor was removed.
As I grew older I had a normal life but I always had a brace to go along with me. It was great that I had my brace at such an early age because all the kids thought it was the neatest thing. Whenever they would ask what it was for, I would say that I was shot and it holds me together, or I would say its a bullet proof vest. But as I started to grow more my scoliosis got much worse and at the age of 10 it was time for my second major operation. During the second surgery, they placed an *adult* rod in me, because something happened to the childrens rod and I had a spinal fusion done on me. The adult rod was Horrendous and stuck out the top of my back like an inch. I showed my friends and they occassionally would peak down my shirt and be like cool! But I always hated it. I especially hated the whole growing thing because when I was younger my back was normal looking but as I grew it was like my torso just became mangled.
I continued to the 6th grade then 7th and 8th and 9th and 10th until my spine refused to stop growing. My rod was just not doing the job and I needed a whole set of surgeries to stop the curving. I was not a tall guy at the time, I was about 5'3 or 5'4 and I was very skinny with long legs. But back to the surgeries. The plan was to have 3 surgeries. The first was to take out my first rod and *de*fuse my old spinal fusion. The second surgery was where they put steel rods through my Knees, and then attached a halo to my head (ring drilled into my head). They then tried to stretch out my spine by attaching weights to my head and legs for TWO whole weeks. It was the most painful experience I ever had but I never complained one bit. After the two weeks they then tried to realign my spine the best they could and attach 2 more steel rods in my back and refuse my spine. Unfourtunatly my spine is so curved that they couldnt straighten it out very much. After the 1.5 months in the hospital I ended up growing a good 3 to 4 inches. I thought it was halarious cause it was like they did some type of medeval torcher bed on me. Anyhow I took my Junior year off and had a tutor come to my house and teach me.
I continued my life into my Senior year which I attended a technology school in Daytona beach Florida. It was great fun and I enjoyed my year. I was not a popular kid but I had my friends and I managed to never get fun of all my highschool years. Right after the last day of school my body just gave up though and I started having problems walking. Then I was not able to urinated and I was scared sh!tless. I took it like a man and was catherised for a good 5 weeks. Lol my bag did get a hole in it eventually and we had a ball trying to figure out how to ziplock the damn thing up. It was funny and I never realized how awful piss smells. Anyhow... It had to be one of the worst situations in my life because the ability to not pee is probably the most painful thing in the world. I went to the neurosurgeon and they said they found a syrinx. Supposidly a syrinx is fluid in the spine so they decided to go and operate on me for the 6th time. Horribly it was not a syrinx they saw, it was tumor and they were not prepared so they managed to get only a tiny portion of it out. Thank god though it was enough to relieve me and let me walk and pee again. I still dont understand but I thank god every time I take a leak
. Anyhow after the surgery my parents insisted I go to physical therapy and get my strength back up. Now I am a weight lifting freak and I am trying to build my body up. I continued my training and joined the gym membership where I was receiving physical therapy. I now drink Prolab N-large 2 protein weight gainer, creatine, and other supplements. I have already gained 8-10 lbs (im very skinny 112 lbs atm) and I am really excited because my chest which use to look extremely weak has some definition to it. I hope to keep working out so my back and chest doesnt look so akward. Working out has to be the best thing I have done to my self-confidence and it might be an option for you people that need a boost. Anyhow I really hate scoliosis but I am proud that I went through 6 surgeries without one ounce of fear. Its funny actually, I think of it as surgery is no biggy Im not gonna be doing any of the work, the doctor is. All you have to do is be a good sport and do it because in the end it will save you a lot of pain.
PS
I am sorry for such a long post, but I feel there is so much to my life story I needed to share. I am going to read over it and see how many mistakes I have made lol.
thanks, I dont know exactly how to reply to this forum yet because I am use to one where I submit computer games that I make/program. Anyhow ya I like working out, its great. One thing I am kinda mad about though is my doctors never did a thorocolaspy on me. I do not understand WHY! I get to see my doctor the 12th of December so I guess ill bring the topic up and see what he says. All I can do is pray there might be some hope in reducing the stupid rib hump.
Comment