Anterior and Posterior Surgery

[Worriedmom]

Peggy,

I am so sorry for the mix up regarding the 36 lb girl. I should have been answering Carmell. I usually go on the computer late and exhausted. It is 1:30 AM right now.
I'm so glad your daughter is feeling so good. My daughter's surgeon said six weeks for her, but I'll believe it when I see it. You read my mind and heart regarding "a nightmare that never seems to end pre-surgery." I feel as if I cannot exhale any more. I keep looking at her back and can't believe what they must do to my baby. I know all of you know what I'm talking about. I'm so glad I found this place to talk to all of you. Your words bring me comfort and hope. Thank you for your prayers. Again, I'm so pleased your daughter is doing so well.

[Peggy]

No reason to apologize! Take a deep breath and picture your daughter home back to her old self and all this behind her. When I got crazy it would help me to envision the doctor coming out after surgery and saying how well everything went and the relief that would come with it. I pictured my daughter returning to her favorite activities and laughing and joking again. And of course lots of hours of prayers. Hang tough and be sure and let us know when you get a date set. We all know where you are coming from. This board does help you keep your sanity. Take care. Happy thoughts!

[mumof5]

The waiting is the hardest part.
When it is all over and you are back home, the days will go by so fast that you'll really have to think hard to work out how long it's been since the surgery. You'll look back at your old posts and think I can't believe I was feeling all that just a few weeks ago.
Best wishes.
Cheryl.

[paulasue2]

Hi, Peggy,

Thanks for your greeting! Life has been flying by and I don't have time to come on line as often as I used to. I am so glad to hear that your daughter's recovery is coming along so well. You are right - we are so lucky. God bless! Paula

[Worriedmom]

Peggy,
Thanks. The date is August 11th. I do try everything you mentioned, including spending more time with her and trying to do fun things. Thanks again.

[Worriedmom]

Mum of 5, Cheryl,
Thank you. I can't wait to be feeling that way!

[nanmccune]

My daughter had surgery for double major scoliosis with curves of 74 and 76 degrees in October 2002, she was 11 years old at the time. She has grown some since her surgery, but will not grow through the region that the rods are holding, which is from her neck to her waist. I was not told that this would effct her growth until after her surgery. Luckily, my daughter was tall to begin with. If you have questions concerning your daughter's growth, as them before, as I did not do. Natalie is doing great and still an excellent athlete 1.75 years after surgery.

[Worriedmom]

Dear Nanmccune,

Thank you so much for your post. You are the first person to say that their child had a double major with similar degrees of my daughter and of similar age. My daughter is 10. I did not know about the growth element you spoke about. I must ask the surgeon and staff. Thank you so much for the pointer. How is everything with Natalie? Did she take long to recover? I'm getting such mixed information with regards to recovery. I know each child or teen is an individual, but some say it is quick and others much longer than expected. The answers I'm receiving are not necessary of this chat arena. I have found other sites with other concerned moms or teens. Again, thank you so much for your help. I would like to know if the recovery time seemed longer than what the surgeon said. Right now, he's telling me that Jess will be out for about 6 weeks before returning to school. Thanks again for any reply.
Worried mom

[nanmccune]

Worriedmom,

Natalie is doing great. She recovered faster than I thought possible. The hardest part was stopping her from doing things before the doctor released her. Exactly 6 months after her surgery, Natalie talked the doctor into letting her play softball. I doubt that he knew exactly how aggressively she would play, such as sliding, pitching(fastpitch), and playing shortstop for 2 teams. She was in a lot of pain after games and practices because of her back muscles being cut, but she was determined that the surgery was not going to stop her from playing. She continued to have pain off and on for almost a year, which she controlled with ibuprofen (800mg). Natalie very seldom has back pain now, and it usually happens when the weather changes. She does lean to one side occasionally when she is very tired, but is much improved from before her surgery. Her bellybutton was 2 inches off center from her twist before surgery, and is back to center, so we know that her correction is still holding. She still plays for two softball teams and is on an all-star team that is undefeated going into the district championship. I keep thinking how great it would be for other scoliosis sufferers to see someone post surgery play in the world series, but that is a month and about 5 wins away, I'll surely post for all to see if they make it so that other patients can watch and see that life can return to normal if you make it happen.

Nanmccune

[mumof5]

Natalie is such an inspiration. I hope they make it through.

Worriedmom;
Amber went back to school after almost 7 weeks. She has had a great recovery. But did find sitting for very long hard. I wrote about it on the thread; worried mum from Australia. She has been on school holidays for the last week and a half. School goes back on July 19th. She is looking forward to going and trying to last more than a morning. It is a very individual thing and it really does depend on where the fusion is as to what you can do. Amber had a few problems with her hips that I hadn't known about ( she is fused from T4 to L4), but she is much better now. It has been 9 weeks today since her surgery. She still gets tired easily and 'hunches' over when she is physically very tired. She has even managed to shave her own legs, very important for the older girls! The only 'bathroom' thing she hasn't done yet is have a bath. She says she will stick to having a shower. I think she's worried about getting stuck in the bath and me not being able to help get her out.
Amber turned 15 a few weeks ago and has stopped growing. I have heard of the surgery being done so that the rods can be extended as the patient grows. Ask if this could be an option for your daughter.
I have also had a look at another 'forum' and this one is so much better. The people here give much better advice and support. Three cheers to everyone here.
Best wishes.
Cheryl.

[Worriedmom]

Dear Nanmccune,

I'm so glad to hear that Natalie is doing so good and thank you so much for the detailed update. Jessica loves soccer and swimming and was crying when she heard she would not be able to do these in the Fall, but I reassured her that with the surgery she could do them for the rest of her life. I will be cheering your daughter on from a far! Thanks again for all of your advice and information.

[Worriedmom]

Dear Mumof 5, Cheryl,

I'm glad to hear that Amber is feeling better. Thank you so much for the information and the details. I just learned that Jess will have fusion on T-5 and then L2 and L3 and possibly L-4 and L-5. Her surgeon is well aware that I do not want the last bone fused due to lack of mobility later. He agrees that he will avoid it if possible, but that some of these decisions are made during the operation itself. He needs to see the horizontal balance once he's in there. With the grace of God, he will not touch the last bones. He and I discussed that because she is so young, we very possibly can wait to see if it holds well. I rather give her a chance, if there is option to do so. In terms of growing, I asked about if the fusion would prevent her from growing and was told that only in the fused areas this would happen, but her thoracic area is already fully grown and 40 percent of her height will come from her legs, knees, etc. I was also told that no future surgeries would be needed in this area if it holds, for any reason.
I'd like to know your opinion or anyone else's on this statement.
I do not blame your daughter for fear of getting out of the tub. I think I'd be worried as well! I also heard from a 22 year old girl who just had posterior done and she said that the shower hurt when she first had to bathe and that the removeable shower head to wash was easier so that she could avoid the area. What is your opinion?
Thank you again for all of your help.

[Worriedmom]

Karen Ocker,

Hi. I have tried to ask for help as to how I can reply to your wonderful, profound and inspiring email to me, but could not get help in doing so. I cannot thank you enough. I will remember your story always.
WorriedMom

[mumof5]

Hi Worriedmom,
Amber is getting better and better everyday, it's hard too believe that the surgery was only 9 and 1/2 weeks ago.
Amber's surgeon was unsure about her L4 and L5 as she had a 45 degree rotation. Due to her age etc he didn't want to go to L5 but he did say that although unlikely there is still the posibility of needing further surgery to extend into this area. That would be apparent around the 12 month mark. As I understand it the curves that are left above and below Amber's fusion will be corrected by the fusion as time goes on, the fusion will "pull them straight". The surgeon said 'works in theory and usually works in practice but it is not 100% gauranteed'. It depends on the degree of curve and rotation. He took the wait and see approach and was pleased with the amount of correction that they achieved. He said it would be better this way rather than go further unnecessarily. That is why the kids have so may post-op checks, to keep a check on how the rest of it is going as well as checking on the fusion.
We used a hand held shower head for the first few weeks. It was so much easier. We also had a plastic garden chair as well. The first week home I helped Amber to shower, with the fusion being high it hurt her to lift her arms above her head, I washed her hair and did whatever she couldn't. The hand held shower head meant that I could direct the water where I wanted it and washing her hair was easier.
A funny thing that happened to us (well I can laugh now) At the hospital during Amber's first shower she asked if I could do it rather than the nurses. Everyone agreed. (Amber was still on a lot of morphine). Well I asked her to hang on to the shower head for me (I can't remember why) and she 'hosed' me head to toe. I ended up wetter than she did. She doesn't even remember it.
Amber has been using a regular shower head for the past 6 weeks or so. We have two showers so I can have both set up and she can use either. It didn't take very long for her to be able to lift her arms although it takes her a little longer (she can't hold them up for too long at a time) but she is getting quicker all the time.
I don't know how much difference T4 (Amber) and T5 will make. It will be interesting to see. Amber also had ribs removed that I assume made a difference as well.
I hope this has helped you some.
Best wishes.
Cheryl.

[TiarnansMom]

Hi, I'm new here but thought I'd post here first because my son, who's 4 now, went through an anterior/posterior spinal fusion at 5 months old.

He had a rare rapidly progressing spinal kyphosis, so that's a bit different than double scoliosis. He had a bone graft put in and was in a full body cast for 7 months.

I'm not sure how it will be for a 10 year old, but let me just tell you to ask the doctors tons of questions. (I'm not sure if your daughter has undergone the surgery yet or not) Because my son had a problem after the surgery where his bone graft 'shifted' a bit from holding him up, due to the fact that the bone graft was stronger than his other vertabrae. It resulted in a 30 degree bend, but that was better than the 60 degree bend he started with. But then again, a ten year old's vertabrae is a lot more formed than a 5 month old's.

I wish your daughter the best with her surgery.