Scared for my granddaughter

[grammytokim]

My granddaughter is 13 and has been diagnosed with a severe curvature of the spine. The top is 64 degree and the bottom is a 62 degree curvature. We were shocked when we first found out about this just 4 months ago! She went to her family doctor for a physical to play volleyball and it was discovered. It's like it just happened - with no warning. She had complained of back pain, but we never dreamt it could be anything this serious. My son and wife took her to an orthopedic surgeon here in Cedar Rapids, IA. He advised surgery was needed. A 2nd opinion was sought at the U of Iowa hospitals. Of course we found out how serious this is and surgery is needed...2 rods all the way down her spine! We are petrified! They've agreed surgery can wait until summer so it doesn't interfere with her 7th grade classes. In fact, they are going to wait until mid-July so she can have some summer fun before the surgery. The surgeon said the rods will stay in permanently. Yet, we've been told by a physical therapist we know that it doesn't have to be that way ... they can be removed so she'll have more flexibility. Can anyone help with this? ... What have your experiences been? She wants to play sports and/or be a cheerleader in h.s. - how limited is someone who has two rods fused to their spine from top to bottom? It's only February and we're already so nervous to have her go into surgery. Can anyone give any and all advice?? Thank you so much!

[CurvySAT05]

Hi. My name is mandy and I was fused from T4-L2. It is good to keep the rods in for support and most surgeons dont like to take them out unless absoultly needed because it requires another surgery. I had one of my rods removed 7 weeks ago because it was sitting on a nerve and causing pain. When they do the surgery the first time they fuse the vertebra together and if/when the rods ever come out she wont gain mobility back because the bones are fused. It is like keeping the rods in, just them being out. The rods are placed to help the bone fuse and not move during the healing process. They serve as added stability once the fusion has happened.
Many people have gone through the same surgery as your granddaughter and some even say that it was such a relief to have the spine straightened that they would do it again if they had to because it makes that much of a difference.
Good luck in the weeks and months to come.
Mandy

[Snoopy]

Welcome! First let me say I'm glad to hear that your son and daughter-in-law have taken their daugther for at least a second opinion. At 64 and 62 degrees, I think most doctors would recommend surgery, but it is always good to find a well qualified doctor that everyone likes before deciding on anything. My daughter, Jamie had her surgery almost 14 months ago at the age of 13 and although we were told she can have her rods removed after a year, her doctor doesn't encourage it to be done unless absolutely necessary. As far as specific questions like cheerleading questions, you'd have to ask her surgeon. I've learned that each child and each doctor is different and I wouldn't want to give you false hopes about cheerleading.

My best advice for now is this: 1) make sure your granddaughter is being seen by a pediatric orthopedic doctor; 2) have your family make a list of questions to ask the doctor; and 3) ask someone at the doctor's office for a list of patients who he has done this type of surgery on and call them.

You'll find several families who have gone through what your family is facing, so feel free to continue to ask questions. We are all here for you. If your granddaughter would like to talk to Jamie, let me know and I'll give you our e-mail address.

Mary Lou

[Cheryl M]

Hi, I can certainly relate to your fear. We were in your shoes about this time last year. Get the scoliosis book by Dave Walport. IT's a great resource to have and lists questions you should ask your surgeon. You can get it from the NSF store, I think. Check out the thread "We have a surgery date." It's long but there are 5 or 6 mom's who have posted on there and it starts about a month or so before our children were scheduled for surgery. We're all about 6 to 9 weeks post-op now. You will see that we were all so afraid but we supported each other and continue to do so.

Tell your granddaughter about the spinekids.com forum. It's where the kids talk. She may choose not to talk but she will find that she is not alone in this. There are lots of teenagers facing scoliosis. My daughter really started opening up once she started talking with the other girls and they have given her great advice as many had already had the surgery.

Just make sure you choose a Dr. who is very experienced in pediatric orthopedics and specializes in scoliosis. Shriners hospitals are great. When my Daughter was at 60 degrees/55 degrees, our 2nd opinion told us that there wasn't a dr. in the world who wouldn't recommend surgery at that point.

My best to you.

Cheryl M

[The Slice]

Just one other bit of advice which is to be sure that your granddaughter is included in the discussions and decision making during this whole process, this way she will maintain somewhat of a sense of control.

[Karen Ocker]

For grammytokim

"

They've agreed surgery can wait until summer so it doesn't interfere with her 7th grade classes. In fact, they are going to wait until mid-July so she can have some summer fun before the surgery. "

This was my experience in the 8th grade in 1956: My surgeon wanted to do the surgery right away because my curves progressed so rapidly and were very large. My mom wanted me to "have a summer"; she was also so terrified because, those days, the surgery was much less perfected and involved staying a year, in casts, without walking.

It was the worst summer of my life; my curves progressed over those 6 months and, for that reason, my correction was less. No boy would look at me in that condition and the pain was much worse.

Despite all that I married a wonderful man, became a registered nurse and a certified registered nurse anesthetist. Your granddaughter's life can be perfectly normal after her surgery.

About the hardware: It's purpose is to support the spine while the fusion heals, allow for early ambulation(otherwise a year in bed to heal) and continues to support the spine, holding the correction throughout life.
Whoever told you that the rods can come out was giving you misinformation. Yes, sometimes they are removed if there is a problem with pain, infection or healing. However, correction has been lost in some of these people and they opted to have new hardware put in. Because I had no hardware with my original fusion I lost the modest correction I did get in 1956.

Later on I did have a successful revision 40+ years later.

I am 63 and still working.

Hope this helps.
Karen

[Laura P]

Dear Grammytokim,

I ditto everything that is said "and do include her in all decisions". This will let her feel like she has some control. We let our 17 year old pick the time she would have her surgery. We layed out all of the options and she made the final decision. Keep us posted as to how things are going. You will find this forum a huge support. I did not know about the scoliosis book and so I got 100% of my info from all of the wonderful parents here. Actually, after you see what she goes through after surgery you would hate to have her go through it again to have the hardware removed. I just look at it as extra insurance on stability.

Laura P.
Daughter had surgery 12/16/05 Fused T2 - L1

[grammytokim]

You've all helped so much already!

I already feel so much better just reading the replies from today. Until now, there really has been no one to talk to or get some opinions from people who have already gone through this. Thank you all so much! I'm going to refer Kim's parents to this forum as well. For those of you who have already gone through this, I wish you continued success in the recovery stage. I plan to keep checking back to see how everyone is getting along. Then as Kim's surgery date becomes closer, I'm sure we'll be back with plenty of questions. Again, thank you all so much for your support and help... and again, good luck to all of you who further along in your treatment. God Bless! (Kim's Grandma)

[Cheryl M]

I would also like to warn you. My daughter's curve progressed rapidly in only a few short months. In March, it was 42/35. She wore a brace and in July, it was 60/55. When she had her surgery in late November her top curve was in the 70's. Briann missed part of her 8th grade year but the school was great and she still made a/b honor roll. She had a homebound teacher. I urge you to keep a close check on her curve and make sure it doesn't progress rapidly. Hopefully she will be one of the lucky ones.

Cheryl M

[flowerpower]

Grammytokim, I would like to ditto what Cheryl M said. In March '05 my son's curves measured 44T/42L. We were not supposed to see the dr. again until Sept. '05. In July I thought I noticed a progression and insisted on an appt. His curves measured 49T/44L. Instead of scheduling surgery immediately we decided to wait until Dec. because; 1. His Risser measurement was still 0 (this is determined by looking at the growth plates in pelvic area, a measure of 0 means there is still alot of growing to do, a measure of 5 means skeletal growth is complete) 2. Not knowing how long recovery would be, I didn't want him to miss the first few weeks of high school since he is a freshman, 3. We scheduled during Christmas break to minimize what schooling he would miss; 4. I was panicky and wanted to research as much as possible to be prepared, and while all that worked out wonderfully, by the time surgery day came his curves had progressed to 60T/53L and the rotation of the spine and ribcage had advanced even more than the dr. thought it would. They ended up fusing 1 more vertebrae than was originally planned also. Given that, I almost wish we would have had surgery sooner so the correction of the rotation would have been better. I would just caution you to keep up with the research now, and keep an eye on her, don't be afraid to insist on an appt. sooner if you think there has been a change and possibly be prepared to schedule surgery sooner if her curves start to progress more. Best wishes to you, keep us posted on your "journey".

Renee

[ScolioGirl]

Please don't go out of your mind with worry!

I went through this surgery in October, and I'm not going to lie - it was bad for the first few days, but it's so amazing how fast you can recover when you're young. Some people are ready to go back to school in just four weeks. I was a little slower than average -- a couple of hours a day at seven weeks. I've been back full days for a long time now.

And as far as flexibility fused, it's another amazing thing: you can do pretty much everything you did before in most cases. I have two vertebrae at the end of my spine unfused, and I'm really surprised at all I can do.

I feel way better than I did before surgery, as far as backpain goes. I'm much more of a normal teenager than I was before surgery.