Scoliosis Support Group

Scoliosis affects all ages. Unlike the naturally occurring curves in the spine, scoliosis causes the spine to curve abnormally to the left or right.

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/ Scoliosis Support Group

Frightened

clariRoo18
clariRoo18

My scoliosis is rapidly progressing. Im 14 years old and I was first diagnosed with scoliosis about 8 months ago when I was at Shriners Hospitial for a check up after my last leg surgery (I had both my femurs and my right tibia and fibula sawed in half and got plates and screws putin all) and I had been having back pain for a while so I told my orthopedic surgon and he looked at my back and had me bend over and had me go get spine x-rays. When I got back and after he looked at my x-rays he told me that I had a small 20 degree curve and that I had already reached skeletal maturity so it shouldnt progress any and that he'll have me get it x-rayed every 6-8 months. My back pain continiued to get worse and i noticed that my shoulders and hips were begining to get even more uneven. By the time I got my next x-ray (last week) I wasnt able to sleep because of the pain and could barely make it through the school day. When I went back to get my new x-rays last week I was wrongfully optimistic because I was mainly going to talk to my surgon about when I get to have my leg hardware removed. But when the doctor came in he told me that my scoliosis was now 50 degrees and the curve was my entire back and that if I dont get it fused it will most likely keep incresing at a pace of around 4 degrees per month. He then continued to say that he thinks it only progressed, and progressed so rapidly and severely, because I might have a spinal tumor or that my spinal cord is oddly twisted and he hopes that thats not the case but scheduled me for an MRI just to make sure. He said that if the find a tumor a Neurosurgon will have to remove it and then I would have to go back to him (at Shriners) for spinal fusion, and if they find the oddly twisted spinal cord then a Neurosurgon will have to fix it with surgery and then I would go back to him (at Shriners) for spinal fusion, although, he said that he hopes they wont find anything so then I will only have to get spinal fusion surgery and no other back surgery. Im really nervous for my MRI, and I dont know how to take this, I have a very high pain tolerance but the pain is getting too much for me and no non-narcodic pain meds help and just the thought of having to get two back surgeries is scary, and so is the thought of having a tumor., and I just want to be able to do the sports I love and competive marching band, and be able to walk around school without people looking at me weird because of all the visable signs of my scoliosis. Please, if you have any advice for helping with the pain or the scariness of the surgery or eing able to cope/ignore all the weird looks and people saying Im a faker (or tha scoliosis doesnt hurt) or just nor being able to do the things I love, please tell me I could really use the help. And just support is fine too, anthing helps, just need someone to talk to.

scoliosisdad
scoliosisdad
My daughter had scoliosis surgery at age 20, over 2 years ago, nearly her whole back (T2 to L2) and she is very happy she had it done. She no longer leans. My advice is to get a second opinion on what needs to be done and research the doctors credentials. Don't be afraid to ask for references and how many he/she's done, and if you need to, travel to a good hospital to have it done. If you have any question as to whether something needs to be done, the second opinion should settle that, as long as you get the second opinion from a doctor not referred by the first.

After she was released from the hospital, we rented a hospital bed that had a motor allowing us to prop her up for a couple weeks. When she needed to get out of bed, we could flatten it out so she could roll on her side to get up. Before you leave the hospital, a therapist will teach you what to do.

Good luck.
Jesshang
Jesshang
I had scoliosis surgery at 13. I was diagnosed at 9, I'm now 24 and have had my rods in for 11 yrs. You are going to do fine. The first day when you wake up from surgery it will feel like hell. But after those 2 days you will feel like yourself again. I remember when I was in 7th grade and moved to a new school and making new friends. There was a rumor going around that I was the new girl with a dragon tattoo on my back. In my head I laughed but I confronted anyone who asked me and I told them I had corrective scoliosis surgery and what that person saw was my scar from it. Don't be afraid, your already so strong for having the first surgery. You'll do fine. After one year of healing you can go back and do what you enjoy. Best of luck to you sweetie. Stay strong and always stay positive.
Mariko
Mariko
Hi clariRoo18. I was diagnosed at age 12. I was put in a plastic jacket for a few years, but that did not stop the progression of my curves. I was very scared and worried also because the MD said the curve was compacting all my internal organs and if I didn't have the syrgery, I would die before the age if 25. I was terrified living with that prognosis What I did was reach out for the bible. While I was in the hospital before my surgery, I met a womenin the bed next to me. She gave me a book. The bible. I was so filled with fear, as this was the night before my spinal fusion with the 14 inch rod. I read and asked the Lord to fill me with hope, peace and confidence that the surgery would be successful. It was, and there were no complications. I am eternally grateful for that woman and the Good Book the Bible!!! God can release your fears, just believe in him and read hia word everyday!! Of course there will be pain and days when you feel diwn, but with God's love, you will be alright. I went to school, my senior year in high school and had a fI'll cast from neck to hips that weighed 15-20 lbs. I was laughed at and made fun of. I got a tutor the next day, paid for by the school! Look into that. See if there is a way for you to study at home if you feel self conscious. I had one of those old fashioned plaster casts! My hips bled from walking to classes, that how I got approved for a tutor! I would have the surgery done. Good luck and God bless you! If you need encouragement, please contact me if you wish on this site.