My story

I am brand-spanking new, so here's my intro...

My name is Amanda Long and I just turned 23. The summer before entering 7th grade, I was having a physical for Girl Scout camp and the doctor noticed a slight hump when I bent over. She refered me to a doctor at the University of Iowa. We were VERY lucky to get onto his patient list; he is well respected, and is one of the best Orthopedic Surgeons in the US, Dr. Stewert Weinstein. He suggested imediate bracing, and I was fitted for a Boston brace. I had three very bad curves which simply progressed as I got older, but they didn't want to perform the spinal fusion on me because my skeletal structure was so imature. If you're looking at my back, the curve in my neck goes to the right, the curve in my upper back (and affecting my ribcage) curved to the left and the curve in my middle back going to the right. Not only did I have these three curves (which is rare, usually there's only one or two) my spine was also twisting with the right side of my ribcage protruding to make a very noticable hump when I bent over.

I was required to wear this brace for 20 hours a day, (which made for some EXCRUCIATINGLY hot Iowa summer nights) for 6 years, until they felt that my body could handle the spinal fusion. The June 4th was the magic date for me, and let me tell you, I was terrified. I had been on the swim team and a lifeguard in an attempt to strengthen my back, I worked on my posture, I went to the Chiropractor regularly, all to no avail. There were times when I would wake in the night screaming in pain because my neck had frozen and I couldn't move.

I was in the hospital for about two weeks, was on a liquid diet (lost 40 pounds!) and came through it with the help of family and friends. They had me up and walking the next day (I REALLY didn't want to, but they insisted) and had a few close calls while there. 1) they punctured my right lung while removing ribs, sewed me up without realizing it, and didn't discover this until later that day while doing x-rays. Had to open me up and put in a stint to drain the fluid out of my lungs 2) gave me morphine and I swelled so badly that they removed my id bracelet, took me to pt, and left me. I was so sick I couldn't tell them my name or what I was supposed to be doing there, so I was 'lost' for about an hour. 3)switched me to demoral, and I went into anaphylactic shock, bloated, couldn't breath, went unconcious, and stopped breathing. Thank God my mom was there and saw the signs (she's an EMT) I swear her advocacy is the only reason I'm alive today.

I got through it all, I've put away the living hell that my classmates put me through, I've become stronger physically, emotionally and mentally. I now work with adults who have disabilities. I work for Systems Unlimited in Iowa City and love my job. I really feel this whole ordeal gave me a perspective on life that not many people get to have. Because of what I went through, I am sensitive to the needs and frustrations of others with disabilities.

This last June was my 4 year anniversary of surgery, and I couldn't be happier. My husband and I were married this past May, and overall, my life is turning up roses!

I would LOVE to hear from you guys; your experiences, how has this affected you... you know. I would also love to field any questions you might have. No topic is off limits.

Amanda

Hi Amanda.

My name is Sharron and I am 34 yrs of age. The first time my scoliosis was noticed was when I was about 12 yrs of age. I was sitting in front of my mum and her friend. My mums friend noticed that the top right side of my back protruded more than the left side. My mum took me to the Doctor and he diagnosed Scoliosis. Back then there didn't seem to be much on offer apart from an operation. But my mum was too worried about me having my spine tampered with so wouldn't allow me to have it. I'm obviously older now and have started to reconsider. My ribcage also protrudes on my lefthand side limiting what i can wear. Would you say having the operation has corrected your curvature 75%. Also, were you in a lot of pain afterwards?

I await your response

Thank you

Hi,

I too have scoliosis and I am 27 years old now.. I was in 6th grade when the nurse does physicals and thats when they told me I had scoliosis.. I went to doctors and had mutliple braces to wear during the night.. Which I never did.. It hurt wearing that I would wake up in the middle of the night and noticed that it was lying on the floor.. Then in 12th grade they wanted me to start wearing a brace 24 hours a day and that was it I had it with the brace.. I would have to start wearing clothes 2 times my size to cover the brace and I wouldnt be allowd to play gym.. Well all that didnt stop me cause I just didnt wear it.. I wasnt going to go through high school like that I just couldnt.. So time went on and I never went back to the doctors.. Not even yet.. I live with a back & leg ache all the time.. I am constantly asking someone to rub my back for me.. I dont know if there is something wrong or if its just me getting older and now I should get it checked out again.. I was told about the surgery when I was younger.. I was told the 50 50 chance your paralyzed for life story and I freaked and said no way I can just deal with this.. But now I am second guessing myself cause this aching is soo annoying.. Plus I have the lump on my back the one hip and not another look, I always wear big clothes, I am embarrased of the way I look, etc. Well, I just read an article about Video Assisted Thoracis surgery and I was wondering if anyone had this and if anyone knew if I could still have this surgery at 27. Any replys would be awesome.. Would love to talk to anyone who feels just like me.. Oh and by the way I have Lumbar Scoliosis and I have no idea what degree anymore or anything.. Guess i should get it checked out but I am scared to find out there is more wrong with me then my scoliosis like nerve or lung issues..

Talk to you soon