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Posted in: Scoliosis, and Surgery.

Fusion Surgery-12 yr old-help

Started by jmmartin on 01/07/2011 12:17pm

Hi, my daughter is 12 and has a 58 degree upper right thorasic curve. She has progressed 10 degrees from 48 degrees in 1.5 yrs despite bracing. I have received 3 opinions all from spinal or ped ortho surgeons recommending surgery. She has no pain and only a slight deformity of the right rib cage. Nothing very obvious at this point. She has another 1-2 yrs left of growth. She is now 5'3 and started menstruation about a yr ago.
I'm worried about such a major surgery and issues 20-40 yrs down the line for something that currently isn't hurting her and maybe never will.
There isn't much out there on folks who were left untreated and how they are doing many years later. ARe they all in pain, have lung issues, etc.
Any advice would be appreciated. I have many referrals for the surgeon so that isn't an issue. I believe that he is very competant. His main reasoning for now vs. wait and see is that she's very flexible now and they'll get a much better correction this early vs. waiting until she's older.

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Hi immartin... I had a car accident when I was 23, I also needed a fusion and my neck repaired. Do, to my age, they refused to do surgery, and gave me a complete body brace. I stayed in the brace for one year and a wheel chair for a year alot of PT. Then in 1997 I turn 35 and I began to have pain in my back and neck again. So, I started shots in my neck and Back. that work until 2005, then my back and neck started to hurt again, so In April of 2010 whin I turned 47 I fell at work. My right side was completely numb and I could not move that side of my body. So, on May 6, 2010 I had a series of test and was told I needed a spinal fusion on my back. my tail bone and spine had separated apart from each other, five broken vertibrats on the right side of my back, and five bulding disc in my neck and 2 hertiated disc in my neck. I also need a bone graft of my lumbar spine built, along with having DDD,DJD, and RSD on the right side of my body. I've have five surgery since May 19,2010 and getting ready to have surgery number six on Jan 31,2011 on my back, and a procedural on my neck on Jan 10,2011. So, please take all caution to take care of your child. I now have to use a four wheel walker the rest of my life, can't bend down, don't drive, and have complete nerve damage, along with memory lost. I will be praying for you, just always get a second opinion, which is very important ...good luck and continue to pray for a positive outcome...
Sunshine!!!

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Hi, jMarin,
Can I ask you to have a look at Theraflex.
I've set up a Facebook Group called "Scoliosis Cures and Pain Relief" showing amazing before and after pics - one of a 12 year old girl whose back has improved hugely in only 4 sessions.
There are several You Tube videos about it.
There are several Machines in the UK but only one as yet in the USA.
If you are not close to one then show it to the surgeons or some other spine therapists and ask them to
get one for your daughter an their other patients - I got my back straightened with it at 38 years old
Damien

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I am a 50 year old woman with scoliosis. I was diagnosed at 13. I wore a brace for many years.
My curve is now at 60 degrees. I am in constant pain, taking painkillers,& unable to work.
When I was 13, the doctors wanted to do surgery, my Mom decided against it. I know she
did what she thought was best, at the time. But I wonder if my life would have been better now, had I gotten the surgery? 40 years ago, they didn't have the technology, that they have now!
Please explore all of your options, and get a few doctors opinions! I wish you and your daughter the
best!

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My son had his scoliosis surgery at age 15. He had 2 curves. One 22 degrees and the other 55. We tried bracing. He seldom made it through the night. He had surgery done by Dr. Brian Smith who is at Yale New Haven. He had 2 rods put in. They are curved rods so my son still has a natural curve to his back. He is going to be 19 next month & is doing quite well. I had scoliosis surgey back in 1980 when they put a straight rod against your spine & pulled the spine completely straight. Now I have what they called "flat back syndrome" among other problems because of the surgery. I also have a 16 yr old son who wears a brace at night. He has a 22 degree curve. He will have had his brace a year in April. He is determined not to have surgery. At 58 degrees I would agree that it's time for surgery. But that has to be your choice.

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I had a spinal fusion nearly 16 years ago when I was 14, I'm not sure what my curvature was, but I do know it was severe enough that within a week of seeing my Pediatrician I was in a surgeons office. Onset of puberty skyrocketed my curve and it was a race against my body. I personally had no troubles with the surgery or recovery. Obviously it was painful, but any memories are all a blur (they make sure to give you the good stuff). I bounced back very quickly! I had the surgery in the fall, within a month I went to my freshman homecoming dance-- in a brace. The following summer I was playing soccer, that fall I was on varsity-- no brace.

Sixteen years later I stand by it was the best decision my parents made, unbeknownst to us along with the scoliosis I had other related spinal deformities. Left untreated, who knows how bad it could've gotten.
I am months shy of my 30th birthday now, I am more active now (spinally speaking) than I have ever been. I do pilates & yoga (focus on my core muscles), snowboard, run, I also do a pole dance fitness class... flips and all. I don't let the 12 inch rods in my back slow me down. My career sitting at a desk is actually the worst thing I do for my back.

I wish you all the luck, have confidence in your Dr, I felt 100% at ease and it was a blessing.

...and there is nothing wrong with being 5'3! ;)

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I am fixing to be 53 and have had scoliosis as long as i can remember, but it has not really affected me to bad until the last 10 years. I have a very large bump on my back where my ribs are at. My husband lost his job and know we have no insurance they have not denied me but have put exclusions on everything below my neck due to the scoliosis. Now that i need to go to a Dr. I can not afford even preliminary test MRI's Cat scans to see how much it has progressed but i know it is not good news because of the deformity that i can see. At 53 i wish all the time that had i known it was going to be this bad i would have seeked help a lot earlier. I know it would be a scary surgery but i wish now that maybe some day i can get some help before it is to late. I know have horrible pain in my legs and i am sure it has something to do with my back (but remember i can not afford to go to dr) I am a cosmetologist and stand all day and it is becoming almost impossible to work so please think ahead of being 12 because time flies to quick

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I am 52 years old and had spinal fusion done at age 13.. .back in the dark ages of spinal fusions! I am fused from C5 - T9 with harrington rods (That broke about a year after surgery).. pretty common occurrence by the way. Anyway, I have had 2 normal pregnancies and deliveries. Have had a very full and active life, including horseback riding, skiing.. and then became pretty sedentary and gained weight... My back flared up horribly with neck and hip pains, which were all diagnosed as degenerative disk disease. Docs were recommending more surgery and additional fusions. I got my act together and lost 130 pounds and started weight lifting again. Pain is all gone... Back feels terrific and I know that much of my problems were self inflicted. If you feel confident in your surgeon, I would suggest going ahead. I believe that it saved my life, and while I have some issues from reduced flexibility and stiffness... overall my results have been very positive!

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Hello jmmartin: I completely know what your going through and have had all the same worries and concerns you are having. My 15 year old daughter who is in 10th grade just had scoliosis surgery on 12/14/10! She was diagnosed in the spring of 7th grade with a 25 degree thoracic curve then. It was a watch and wait process with every 6 months of x-rays. We tried chiropractic, physical thereapy and we did the bracing for one year and nothing stopped the progression. She is a dancer has been dancing since she was 4 years old. She is very physical fit and strong. I was so against surgery and thought I would never ever alow it. However, July 2010 she was now 58 degrees thoracic and 30 degress lumbar! Everytime she had a growth spurt it got worse. Ok now I'm really scared! I researched everywhere and talked to so many people. We found a great surgeon who specialized in the spine. He is wonderful and amazing. We had our first consulation 9/29/10. However, we needed to get better insurance coverage and this wouldn't be effective until 11/1/10. So, we got the ball rolling 11/2/10 got everything approved, did all the tests and surgery was performed 12/14/10. It was one of the most difficult decisions I've had to make. I was scared to death and so was she. But, what was happening inside her little body was what we didn't know. When we saw the lung specialist we found out her right lung was being crushed! She has only 75% lung capacity now. It's something she will have to live with. She just wont be able to be a marathon runner or olympic swimmer. Things like that. But, she will be able to dance. That's her passion. The day before surgery, we take another x-ray. 12/13/10 she has grown since July and her curve is now 80 degress thoracic 40 degress lumbar! Yikes! The good news now, she's doing great! Almost 3 months post op! She is 3 inches taller and no pain! We are still healing, no bending, twisting, stuff like that, but she got her permit and is driving. 3 more months and dr. will release her to dance again. We will build her strength up with yoga and swimming. My recommendation is if you completely trust your surgeon, do the surgery before she gets worse. She's still got alot of growing to do. It most likely won't stop. Also, they can't guarantee the correction 100% It's usually 50% But my daughter is now 25 degrees Thoracic and 8 degress lumbar! It was AMAZING the correction we got. I am so pleased. She is happy too. No more therapy, no pain and no bracing. Only looking forward to the future! Best of luck to you and your daughter!!

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DO NOT allow anyone to tell you that she can continue life as she knew it. I was 14 with a similar diagnosis and had spinal surgery fusion from T-11 to L4. Yes, it was incredibly hard but I was 14... I made it through with many invaluable life lessons. HOWEVER, doctor told me I could continue playing sports and staying active. The discs above and below the spine wear out on everyone through life, but in about 10 years in patients with fusion. If you think of the anatomy of the spine, this makes sense. Minimize her activity to low impact activities without jarring for best results. I am only 33 and facing my third surgery that is unavoidable. Once you have been operate on, conservative approaches to pain management rarely work. I have no disc left below my now 6 level fusion. This is not to scare, but if you cannot avoid the surgery, prepare and help your daughter accept an altered life in order to maximize her health in her future. If I had a choice and knew what I knew, I would have tried everything to avoid fusions!

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It has almost been a year. What did you all decide?

I was born with congenital scoliosis with a 50+ degrees curve at 13 or 14. By the time I was 15 the pediatrician doc told my family that my curve would affect my growth. I was born 3 months premature so my continued growing was imperative to my spine being corrected in whatever way possible. I had the spinal fusion surgery when I was 15 years old. I am now 34 years old and I would not change a thing. I have some arthritis in my hips now but if it means I can walk straight and do things without my body being in a curving matter than it was worth it.

I would pray on the decision for your daughters health and what you both see as the for her to have a healthy life.

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