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spinal fusion surgery for scoliosis for 11 year old daughter

AnonymousUserAAnonymousUser Posts: 49,622
edited 06/11/2012 - 7:24 AM in Scoliosis
It is recommended by our Dr., that my daughter have her middle spine fused due to her scoliosis curve. She has worn a brace for a year and the curve continues to progress...at about 52 deg. now. Any feedback from girls her age or parents that are facing this surgery or have decided to have it done are welcome to reply.
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Comments

  • I don't know from personal experience, but I have a friend who's son has this problem. She researched on the net and found a great doc in CA (we're in VA). The son is 15 and the surgery they are now comtemplating is done with some type of rod system that grows as he does. This way, they don't have to go back in after the initial surgery. If you like, I will try to get the docs name for you. Hmm, now that I think about it, the doc in CA recommended a doc in Baltimore, I think. Anyway, I will try to get a name for you.
  • Jill-

    I couldn't believe it when I saw your post...sounds like we're in almost the same situation. My daughter is also 11, curve almost 50....but progressing very quickly. Her Dr. wants to do spinal fusion very soon, so we're off to get a 2nd opinion tomorrow. I'll be curious to hear your update & I'll update after our appt. tomorrow.
  • Hi Joy-
    Thanks for your feedback. I have a sister out East, near DC. Sure, if you'd like to pass that info on about your friends Dr. great. I have consulted 2 in the Minneapolis area- so we'll see. Tough decisions. Hope you're feeling better!
    Jill
  • Hi, Ive never wrote on a forum before, but i figured i would tell you my experience.Im 22 years old. When i was in 6th grade i found out i had scoliosis and had to wear a back brace. I started off with the 20 hour one, then later on due to pain i switched to a night brace. Over the next couple years my curve kept getting worse. By 9th grade (15yrs) my curve had got to 68deg. and the dr's decided it would be best to get a spinal fusion, they also did a bone graph from my hip and fused it to the top of my spine. I was fused from t-4 to t-11.I stayed at the hospital for 8 days.. Anyways i remember having to be on bed rest for a while. The drs told me i would have to be on bed rest for the whole summer, but about a month later i was feeling a lot better and could actually move around without feeling like i had a stiff neck. By my senior year, I was having problems with my back and pain sitting in chairs at school so i went to the dr and told them. Appearently my body never grew some kind of fatty deposits to cover over my rods so there wasnt very much cusion between the rods and my skin. The summer after i graduated i had them removed (18yrs). Ever since then i havent really had any problems with my back besides the occasional pain. While i was pregnant with my daughter i had some really bad back labor which i was worried about becuase of having my surgeries. Needless to say i had an epidural and it helped. Having my surgeries was the best thing i could have done. Im not sure if this really helps but just thought i would tell ya my story. If you have any other questions feel free to ask..

    kayla
  • Kayla006 said:
    Hi, Ive never wrote on a forum before, but i figured i would tell you my experience.Im 22 years old. When i was in 6th grade i found out i had scoliosis and had to wear a back brace. I started off with the 20 hour one, then later on due to pain i switched to a night brace. Over the next couple years my curve kept getting worse. By 9th grade (15yrs) my curve had got to 68deg. and the dr's decided it would be best to get a spinal fusion, they also did a bone graph from my hip and fused it to the top of my spine. I was fused from t-4 to t-11.I stayed at the hospital for 8 days.. Anyways i remember having to be on bed rest for a while. The drs told me i would have to be on bed rest for the whole summer, but about a month later i was feeling a lot better and could actually move around without feeling like i had a stiff neck. By my senior year, I was having problems with my back and pain sitting in chairs at school so i went to the dr and told them. Appearently my body never grew some kind of fatty deposits to cover over my rods so there wasnt very much cusion between the rods and my skin. The summer after i graduated i had them removed (18yrs). Ever since then i havent really had any problems with my back besides the occasional pain. While i was pregnant with my daughter i had some really bad back labor which i was worried about becuase of having my surgeries. Needless to say i had an epidural and it helped. Having my surgeries was the best thing i could have done. Im not sure if this really helps but just thought i would tell ya my story. If you have any other questions feel free to ask..

    kayla
    welcome to spine-health...
  • I was diagnosed with scoliosis at the age of 6 when I was in the 1st grade. I wore a back brace for over a year when I was btw the ages of 9-10. Unfortunately it did not correct the progression, and at the age of 11 with a curve in the mid-50's I had two Harrington Rods fused to my spine from T1 to L3. At the age of 20 I gave birth to my son Noah. I had a difficult 48 hour labor and learned later on that I should have had a C-section due to fusion so far down my Lumbar. Delivery was difficult. The anesthesiologist missed twice and hit bone on the epidural before finally finding the right spot and unfortunately even then it did not take. Almost immediately after having my son, I began to have lower back pain. Less than two years later I found out that I had degenerative disc disease in the un-fused discs below my rods. Eventually (when I can afford to) I will have to have more surgery to both remove the rods and get new ones; or to fuse my lower discs.

    I have a few words of caution:

    Keep an eye on your daughter’s mental well being. It is so difficult being an eleven year old child having to face a situation such as this. When I wore my back brace, it stuck out of my clothes and it was very noticeable (I am unsure if that is still the case today) and quite often I was the center of ridicule. To me, that was harder than going through with the surgery.

    Make sure you have a competent doctor who is state-of-the-art in this area of expertise. The Harrington rods that were used on me have long since become obsolete. Not only that, but fusing in the Lumbar region causes degenerative disc disease later on in life. Today, because of the DDD, at the age of 27 I sit on a pillow everywhere I go to lessen the severity of the pain. I often have to resort to taking 1-2 pain pills a day, almost every day.

    To make matters worse, I just got back from the doctor with my six year old son, Noah. We just found out he has a 16 degree curve in his spine. I am having my mother look to see if she can find out what my curve was at that age. It's just frightening. I can only pray that technology has advanced far enough to where my son will have a brighter future than my own.

    God bless you and your family. You are all in my prayers.
  • Kayla-I'm not very good at these posts either, I didn't figure out how to see my responses until tonight!
    Thank you for your story. You are a brave young lady. So, you had your rods removed as an adult, but your spine is still fused T4-11? Is it straight now, because of the fused vertebrae? Claire is scheduled 12/11. I am concerned about DDD in the bones below and above the fused area later when she is adult. Sounds like you have one disc that has some protrusion? Otherwise you are relatively pain free?

    Jill
  • I have a son that just turned 10, so I am keeping an eye on his spine too. Both of my other children have it quite severely. My Mom and I have just mild scoliosis. The funny thing is, I had healthy pregnancies, breast fed them all, stayed at home for awhile...nothing seemes to impact genetics. I am grateful that surgical technology has come this far, but I wish it was less invasive. Such a long scar. I have some disc issues too. I had a laminectomy to repair a herniated disc. It flares up but not much since I had a cortisone shot. Ever tried those? Instant relief. I appreciate your sentiment about my daughters mental health. Kids can be so mean. Claire wore a brace for about a year in elementary school, but since Middle School started, not so much. Fortunately, the baggy fashions kids wear today make it easier to hide a brace. Life is hard sometimes- but I guess there are worse things to deal with when it comes to raising children! Jill
  • Hi there, I hope you're still checking this forum. I hope your daughter's surgery went okay! It was smart to do it during the winter holiday so she won't miss any school.

    Here's my story, which I hope will ease your concerns.

    Scoliosis runs in the family. I wore a back brace every night for three years. The brace didn't slow down the curvature enough, so when I hit 50 degrees at age 17 the doctor encouraged me to have corrective surgery but didn't require it. Since this was a FREE children's hospital (Texas Scottish Rite Hospital for Children, fantastic facilities and care) and I was young/healthy, I decided to have the surgery.

    The doctor drew a line on the side of my rib cage to show me how long the scar would be, and as soon as I got home I bawled. The funny thing is now I show my scar to people all the time because it's so cool looking! It faded a lot so that even when I wear a bikini most people don't notice it at all.

    I had an anterior surgery in the summer. They removed two ribs, took some of my blood, diluted my blood during the surgery and gave me the rest of my own blood at the end, installed a ten-inch long titanium rod, and five two-inch long screws. The x-rays are scary to see, but I am completely normal-looking, right down to the pretty curve of my lower back like what every other girl has.

    The hospital stay was only five days long. I think I walked after three, but of course it was slow and awkward. Every day was a huge improvement. I was bed-ridden for two weeks (except to get up and walk every couple hours, which was all the physical therapy I needed), house-ridden for four, and started college at five. I was supposed to avoid riding in a car for two months in case of an accident, and it wasn't much longer before I could drive myself. Although it took a long time to have my original back strength, it eventually returned. It was only a problem because I couldn't carry my heavier textbooks to class, but it was always easy to find a friend to carry it for me. During recovery I lost a lot of weight, but once I felt like myself again I gained it all back. For the first few months I was noticeably stiff. It loosened up over time, and the long-term result is beautiful straight posture.

    For as long as I can remember I have always loved playing sports. I worried that having a rod in my back would end my sports career (isn't that what you would assume with a fused spine?), but all it did was postpone it for a while. After two years I had the go-ahead from my doctor to return to all normal activities without worry. I resumed playing soccer, softball, running, and started lifting weights. At first I worried about the strain on my back, although the only problem was that my back was so weak it took a while to be able to do crunches (that's right, I can do crunches) and lift things that required use of my lower back muscles. The rod has had little effect on my flexibility or range of motion. I can still touch my palms flat to the floor! I carry a heavy work bag and can lift all my own luggage without pain.

    It is amazing how little I notice the rod in my back. For the first couple weeks it hurt a lot of course. Pain gave way to discomfort, and eventually nothing. I felt discomfort somewhat often during the first two years after surgery, but now I only feel it on rare occasions like when I stand or sit for a couple hours at a time. Airplane seats are very uncomfortable, but certainly tolerable. Discomfort can be a little frustrating because I can't massage it out like a sore shoulder, but it occurs rarely and disappears with an Aleve. My allergies are a far bigger nuisance than my fused spine is!

    If I had known before surgery what I know now, I would have been happy to hear how little my life would change. I was terrified, but I knew surgery was the right choice, especially if I ever gained weight or became pregnant and had to deal with the additional strain on my back.

    Would I go through the surgery again? Absolutely. I love seeing the long scar on my side every day because it reminds me that I went through something difficult and came out better than ever. Looking back I feel sorry for my parents and how worried they must have been about me, but of course everything went perfectly. Now we are all at ease knowing that we halted the bad effects of scoliosis while I was able to do so.

    I'm proud of your daughter for going through such a difficult situation at a young age. It will make her much stronger than either of you expected.
  • On 1/12/09 my daughter, age 11 went through spinal fusion at A.I. Dupont done by Dr. Bowen, Chief of Orhopedic Surgery. Everything is progressing well. You are doing the first thing right and that is seeking out people with experience. I found as many former patients as I could and talking to them helped. It was such a help to me that I was going to offer my name and number to our doctor so I could speak to parents preparing for the surgery.

    Dr. Bowen said he stopped counting at about 1500 fusions in the 1980's. Having the right doctor really helped me get through it. I will not sugar coat it, it is not something easy for you or your child. But I am proud of my daughter. She was released five days after surgery and gets better every day.

    If you want, go to Caring Bridges web site. It is a free service that patients can use to keep in touch with family. I used it to keep everyone informed of progress. My daughters page is titled lisacurley. You can get and idea of my state of mind and the progression of time after surgery.

    Everyone I spoke to had successful surgery. All I will recommend is get the best, experienced doctor you can find and make sure it is at a childrens hospital. Any thing else you need to know just contact me.
  • i was exactly 11 years old when i was diagnosed. i was pretty scared, of course, but honestly, they have really made a lot of advances with this surgery. i spent 5 days in the hospital and had great people taking care of me, and my mom never left my side, so it really wasn't that bad. there was pain, a lot of pain, but pain relievers will at least dull it down to where it isn't so sharp, and help you relax and sleep. the worst part for me was when i had to get up and walk for the first time, but after that, it got much better. your daughter will do just fine. its a scary thing for a child of her age to go through, but if i can do it, i know she will be okay. just be there for you, i'm sure you will be, and stay on the nurses to make sure they give her her meds on time, and she'll be okay. after my surgery i bounced back, they say the younger you are, it actually is easier to recover from. for me it was about 2 months until i was normal again. my problem now is that i was in a car accident and am suffering from the consequences; a part of the hardware from the surgery is now causing pressure on something inside the spinal cord, and i'm getting that checked out by a local neurosurgeon on the 6th. if she continues to have chronic pain that is very severe and there isn't anything she can find to relieve it, i would suggest not just listening to what her orthopedic surgeon has to say. i found out that mine isn't the final say-so on whether or not a problem exists. as a patient theres always the option of a 2nd or 3rd opinion, keep that in mind! oh also i do have a really good tip that you can use, though: right before they take you into surgery, they glue these electrodes to your head and on your chest...my grandmother spent about 2 weeks trying to find something to get that crap unstuck from my hair after i was discharged home, and she figured out that acetone fingernail polish remover works really well. maybe that was just a weird thing that they did at that hospital or something, but just in case you need to, it will work. good luck, god bless and i pray that everything goes well with your daughter and everyone elses health.
  • Hi, my name is Chelsea and I am 18 years old, I was diagnosed with scoliosis at age 14. Although I cannot relate to having a 50 degree or larger curve, I can tell you that the SpineCor brace saved me from surgery. This is a soft brace, with elastic bands that are fitted depending on the curve. The brace is much more effective than other hard braces, because it doesn't cause muscle atrophy and allows movement. My curves are 34 degrees in the mid back and 21 in the lower back, I do have pain from time to time, but the brace definitely helps. I also go to a chiropractor, and that is definitely worth. I just thought I would post this in case it could help anyone. The website for the brace is www.spinecorporation.com

    sincerely,
    Chelsea
  • i was diagnosed with scoliois when i was 6 and when i was 11 in 1988 my curve had progressed to all most 90 degrees even with wearing a milwalkie back brace and serval others. I was sent to a suregon who recomended surgery. I have the harrington rods and wires from t3 to l4. I did fine up to 2001 then i started to have lots of low back problems . I am now awating a dr appoiment with Denver spine the 20 of Arpil to see what can be done for the buldging disks and DDD that i have. I was out of school for awhile that year and all thru middle school i was very active. I enjoied swimming the most in High School. hope this helps
  • i live in denver too! i was diagnosed scoliosis at age 13 and went untreated until i was 21 and tried to join the air force. finally had a spinal fusion (T10-L3) at age 22 with dr. dwier (denver health- bad hospital but awesome surgeon) and dr. lowe (st. anthonys- he passed away recently also awesome surgeon) what my chiropractor has noticed is that i was carrying a lot of tension in L4 and L5. also between my shoulder blades is a smaller curve that may progress into something more because of my poor posture and the work that i do. when i was diagnosed at 13 Evans military hosptial told me that a brace was an expensive and painful waste of time and had me do othodic inserts for my shoes (also expensive and worthless) swimming is a wonderful exercise to do for core strengthening along with pilates as long as you know your limitations.
  • Hi, my name is Alex, and I had a posterior spinal fusion too! I was diagnosed when I was 12 at school, from what I've read this is the most common way of finding it, and it's pretty good they check in school's if you ask me! I had a back brace as well, but was self-conscious and when they told me it probably would not help my back, I did not wear it. When my curves advanced to 40 degrees, surgery was an option, and my family and I chose to get a second opinion just in case, although we had already made our decision. I used to be a gymnast and was devestated I had to quit everything. May 2005 I had my surgery and couldn't leave the hospital for a week. After surgery I had to re-learn to walk, sit, stand, get out of bed, everything we normally take for granted. There were no complications or infections, so when I felt I was strong enough to leave, I came home. I had two rods fused to my spine along with rods and hooks. There was a hospital bed taken to my house and my bedroom became our living room, as I couldn't climb the stairs to my room. Slowly but surely I recovered 100 percent, and in two months I was hanging on monkey bars, although that may not have been a good idea! I was able to start high school that August with no problems and am currently doing great! I graduated last month and am doing fine, although there are some things I am thinking about for my future. Now that I am planning on attending college, I have a lot to consider when earning a degree for whatever I choose to do. I keep changing my mind between what I would like to do and what is best for me in the long run. Also, growing older, but because I'm so young of course, the thought of pregnancy in my future is still out there. My doctor told me my curves will increase five degrees with every pregnancy. I hope your daughter takes good care of herself, there are lot's of things that are different after surgery. With the part time jobs available to studnets and young people like myself, I can work, but am upfront about what I can do and what I can't and employers work with me on it. I am expected to live the rest of my life with these rods in my back and no problems, and so far I'm doing pretty good!

    I have read your posts and am not sure as to whether or not you are still getting on, but I hope you get this post and I hope this helps! I've been looking for a place I can share my story or find others like me. I hope your family is coping well!
  • Hi, I'm a 42 year old female who had spinal fusion of the thoracic spine back in 1983. I had Harrington and Luque (sp?) rods placed and bone graft was taken from my spine and essentially wrapped around the rods to form a solid chunk of spine. :)
    I was laid up most of a summer and had to wear a brace for six months after the surgery to ensure the bone graft was taking. My curvature was approximately 68 degrees prior to the surgery and after the correction it was 28. I do not have any problems of any kind with the area that was fused and I rarely have back pain. In fact, I don't even notice the rod is there. I do however have arthritic pain in my neck and lower back and was told it would be a natural consequence of the surgery. If I exercise it is less noticeable. I do run, in fact, I just ran 8 miles prior to logging onto this website. I run 5k's and have ran a HM and am training to do another HM this fall. I was told way back when not to do any kind of jarring activities...riding horses, running, etc. I'm the type of person who won't let something like a spinal fusion limit my life. I would consider myself a success as far as the surgery went and am doing great 26 years later!
  • Runtjrun, your post brought me so much joy to read! I am also a 42 yof with spinal fusion. How many of your vertebrae are fused? I ran several marathons and triathlon (including ironman) and want to get back to running. 5K distance would be fine for me now! I would love to hear of your feelings when you started running. My back feels so "weighted" and "heavy" and I am just scared to start.
  • i had spinal fusion aboubt three weeks ago. Im 12 years old and ive had scoliosis ever since i was six.they started me in a brace at six . When i first was diagnosed with scoliosis i only had one curve. my doctors put me in a Charleston Bending brace. That brace has a risk of developing a second curve since it only pushes one way on your body. Sure enough i developed another curve. they put me in a boston brace and i stayed in tht for the rest of the time.Even though i was wearing the brace, i wasnt wearing it enough. i would refuse to wear it to school and when i went away to summer camp i didnt bring my brace. When i got home from camp , the curve had increased so much that i could barely get my brace on. So i decided not to. When i went to the doctors for my checkup he recomended spinal fusion. I of course started bawling because i was so scared. He said that when i came for my next appointmeant in three months he would check again. So i told myself that i had three months to do this so i gave it all i got. i wore the brace to school and tried not to ever take it off. When we went back into the docs he said that the cure wasnt to doing any better :( he recomended that we would have spinal fusion over the summer. We scedualdd the surgery.over the summer when i was supposed to get the surgery, i got pnumonioa so they wouldnt operate. we rescedualed. when i went into the docs three weeks ago i was so scared. but the surgery went great ! They had me stasy in the hospital for a week and on the third dayy they had me go into the bathroom for a shower.everyday at the hospital they take you out of your room to walk in the hallways.In about a week im going back in for my post operation opointment. i wish you luck in what ever road you choose. im feeling great now and i feel stronger every day! Good Luck!!


  • Hello Gracie! Good to hear your story. I hope you'll stay around and tell us about your recovery. The experience you've had could well help other kids who are facing this surgery. You sound very brave and I'm glad it went so well for you.

  • How is your daughter doing now? Was she done growing at 11? My daughter is only 11 and is 4 foot 11 inches tall. They are discussing fusion. SHe has growing rods in her now, mwhich have broke 4 times
  • LizLiz Posts: 7,907
    This is a  old discussion the original poster is no longer a member on the site, so I am closing it.
    Liz, Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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