spinal fusion surgery for scoliosis for 11 year old daughter

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Anonymous (not verified)
Title: Member
spinal fusion surgery for scoliosis for 11 year old daughter

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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Joy
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Last seen: 4 years 3 weeks ago
Title: Member
Joined: 06/21/2008 - 5:11am
Surgery

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.

carman (not verified)
Title: Member
Daughter also 11, and thinking about spinal fusion

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.

Jillybeans (not verified)
Title: Member
East Coast Dr.

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

Kayla006 (not verified)
Title: Member
Hi, Ive never wrote on a

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

bigcat90
bigcat90's picture
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Last seen: 3 years 4 months ago
Title: Member
Joined: 06/17/2008 - 11:41am
welcome

Kayla006 wrote:
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...
mel_noah (not verified)
Title: Member
Here is my story

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.

Jillybeans (not verified)
Title: Member
daughter w/ scoliosis

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

Jillybeans (not verified)
Title: Member
seems to run in the family

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

meganTX (not verified)
Title: Member
great surgery experience

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.

tbcnlc (not verified)
Title: Member
11 year old fusion surgery

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.

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