spinal fusion surgery for scoliosis for 11 year old daughter

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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mrs.rsr (not verified)
Title: Member
Hi! Welcome to the forum. I

Hi! Welcome to the forum. I just wanted to share my story with you. I nor anyone else could tell you what to do, but we can share our experiences. I was diagnosed with scoliosis at age 8. I wore a back brace for 7 years. I was 15 when I had my first back surgery for scoliosis. I had a single harrington rod put in and they also took some peices of my pelvic bone and put it on my spine so it would fuse the bones in place. I stayed at Children's hospital for 6 days. On that 6th day they had me up and walking (things may be different for your daughter) with a back brace on of course. I recovered rather quickly, and after 4 weeks I was wanting to return to school, so I did. By the age of 17 I had made many complaints about a picking, stabbing pain in my upper left back. I was sent to see my spine surgeon, and he decided the rod needed to come out, and they also wanted to do exploratory surgery to check for any small fractures. Luckily I didn't have anything else going on, so they just removed the rod and all the wires and screws and sewed me up. Since then I have had 4 children, and I am almost 32 years old. During my pregnancies I didn't have too many problems. Little did I realize, though, that hormones produced by pregnancy can affect your spine (and all your other bones in your body). After my 4th child, I was having some serious mid-back pain. I decided to find me a new doc, and she ended up doing a bone scan on me, and decided that surgery was the best option. I was 27 this time, and I had another spinal fusion of the thoracic spine. She says that I will eventually need to have my lumbar spine fused, but I was still too young to do that. If I would have have my lumber spine fused, then supposedly I would no longer be able to bend at the waist (beings I have children, that would not be good). I have been having alot of new problems recently, and I really need to find another doctor (the one that did my last surgery moved out of state). I hope this helps you, and not scares you in any way. Remember, everyone is different. I think that it is a good thing to have done. I just think that my pregnancies really affected me. If you have any questions at all please feel free to ask by sending me a private message. Talk to you later and best of luck!

Jillybeans (not verified)
Title: Member
Claire 11 y.o. Scoliosis

Hi Cyndi! Thank you for your letter. I noticed you went to Children's Hosp. Are you in the Minnesota area? Claire will have her work done at Gilette's Childrens Hosp. if we move ahead with this.

Our Scoliosis is genetic...my mother, my grown son, myself, now my only daughter. Breaks my heart. None of my kids have ever had surgery. Just had a check up with Claire's Dr. today. Her curve worsened 10 degrees to a 52 in 4 months. It is very aggressive and they are not optimistic that is will slow or stop. She is going to grow alot more. We are all quite tall in my family (5'8-6'5). The scary part for me is that this procedure is so irreversible and such a 'core' part of one's body. If this isn't the answer for her- there's no going back. I guess you're finding that out. How are they going to make what you had done right? Why did the rod fail you after 2 years? How fortunate they caught yours at age 8. Is it in your family history too? Pregnancies take a toll on everything don't they? (I had 4 kids too- 3 of them after the age of 38!!) Oh, but most days they're worth it!!! Did they put another rod in or just fuse the center spine? Did the curve of your lower spine continue to worsen? Thanks, Cyndi- for your feedback.

mrs.rsr (not verified)
Title: Member
I'm kinda surprised

As far as my first surgery goes, before they would do surgery on me they wanted to make sure I had stopped growing first. They told me that it wouldn't be wise to have surgery till then. That is why they waited till I was 15. (I had my first surgery at Children's Hospital in New Orleans, LA...We live an hour southwest of there--Houma, LA). I am not sure as to why the rod was making me hurt so much, but it did, so they removed it. All I have in my back after my last surgery is a small bone stimulator, which consist of a battery and two wires. The reason they put that in there was to stimulate the bone grafts to take to my spine. I didn't have my center spine fused, it is my upper spine (thoracic). Eventually I will have to have my lumbar spine fused, just don't know when. My back makes a backward's "S". My upper curve is 50 and my bottom curve is 30...I am not sure if that is worse than what they were because we didn't have anything to compare it to. It was a different doctor I had to go to because the one that did my last back surgery moved out of state.
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When I was 8 they told me my scoliosis was idiopathic. No one else in my family has it except for my oldest brother, and his is only slight. My dad did suffer from Rheumatoid Arthritis, and at that time they said that there was no connection, but as I research, I really think that there could be a big connection. I looked up Connective Tissue disorders and they list scoliosis as one of many and also Rheumatoid Arthritis is one. All of these are also considered Autoimmune diseases, and when a parent has an autoimmune disorders the chances of a child getting an autoimmune disorder is greater. So, you can see how I made the connection.

If you have any more questions for me please feel free to ask! I enjoy sharing with you and your daughter.

Your spine friend,
Cynthia

Jillybeans (not verified)
Title: Member
2nd opinion appt. today

Hi Cyndi-

It's my understanding that they want to do the surg. now, instead of waiting until she is done growing because...

1. they will get better correction from 52 than....70, or whatever it may progress to at full height.

2. the curve is beginning to turn slightly, causing some potential effect on lung capacity and organ development.

3. the younger you are, the better you heal.

There are certainly worse things a parent has to endure with a child. But it still stresses me out. Will keep you updated. Thanks for your feedback!

Jill

Joy
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Last seen: 3 years 1 month 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: 2 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.

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