New member, first post

[oliviasmom2]

I have been reading all of your posts and learning from all of you. My daughter Olivia had her surgery last Mon, April 7, 2008. We just came home Friday. Just a little about her: Olivia has a chromosomal abnormality (Wolf-Hirschhorn Syndrome) and scoliosis is one of the things the kids tend to develop over time. She was 10 yrs old last Oct and we just found out that she had significant scolisis in Dec. We were sent for a surgical consult the last week of Dec and were told that her lumbar curve was 55 degrees. She also has had kyphosis (outward curve in upper back) that has been getting worse over time. As she started her period last Aug (early puberty being another issue with the syndrome), the surgeon strongly recommended that she have surgery within the next year before her bones become "set" in place after puberty is completed. We originally were scheduled for Feb 25, but Olivia got the flu the week before and surgery was postponed for 6 weeks. We were very nervous about her recovery because of her inability to ambulate. She uses a wheelchair or we carry her everywhere. (She is small for her age - another syndrome thing). But she has done very well!! Her surgery took 3 hours, and she is able to sit up for about 2 hours at a time right now. We are weaning her pain med. But the best thing is that her surgeon, Dr. Killian, said that he was able to get her COMPLETELY STRAIGHT in the lumbar curve, and almost completely straight in the kyphotic curve. She is sitting up so tall!!

Just a question to anyone: will she be able to look down? She will currently only raise her head to look up, but I cannot get her to bend her head down. Maybe it just hurts? Olivia is nonverbal and I just don't know. Her fusion is from T2 to L? (The incision is all the way to her tailbone).Her follow up appt is April 29. I will find out then exactly how far down they fused. I know they were not able to tie off to her pelvis as originally planned - they said her pelvis was just too small.

(I don't know how to put the little area with info at the bottom of my post.)Could someone please tell me? I look forward to chatting with all of you.

[Geish]

Welcome to the board!
First: you can edit your signature by going to the user cp button up near the top left of the page.
Second: congratulations on the successful correction of your daughters curves. I am fused from T4- Sacrum with and incision all the way to my tailbone too. I am not fused quite as high Olivia but pretty darn close. I have no problems looking up or down. Since they didn't fuse any cervical vertebrae I can't imagine Olivia having an issue either. I bet it does hurt. I remember when I first got home and tried to reach forward I had searing pain in my scapula area. Maybe that is what she is experiencing and isn't willing to give it another try. I only had the pain the first few times and then I was ok. I think its because they cut the muscles off of the spine and move them around. Then when they put them back where they belong they need to readjust themselves. Just my 2 cents. Not sure if I really helped you out.
Alicia

[Snoopy]

Welcome!

My daughter is fused from T3-L2 and like Olivia, Jamie had both Scoliosis and Kyphosis. I agree with Alicia, since her cervical are isn't fused, it is probably a pain issue. Olivia isn't even a week post-op, so I wouldn't rush weaning her off pain meds. My daughter was off all prescription pain meds within two weeks (she has a high tolerance for pain and could also tell me if she had pain), but alot of kids are still on them for four weeks and maybe even more. You know your daughter best so trust your instincts. Her doctor won't let her stay on Vicadin(sp?) or anything like that, for too long, so you won't have to worry about addiction. He may even switch her to Tylenol 3 or something like that after a couple of weeks.

Hang in there and remember to take care of yourself--get plenty of rest, eat right and drink plenty of water.

Mary Lou

[emma12]

My daughter was fused T2-T11 last August, and has no difference in mobility of her neck, back or anything. When I look at the xrays, it seems like the rods are up so very high, but, it truly doesn't seem to give her any problem whatsoever. Being that Olivia so recently had surgery, I would believe that it is just the pain from the surgery. As time passes, I would not think (given my experience) that she will have any issue at all with bending her neck in any direction. And, every kid is different when it comes to pain meds, and tolerance. My daughter has a very high tolerance of pain, and wanted nothing to do with the heavy pain meds within a couple days of getting home from the hospital, but, not all kids are like that. Go with your instincts and don't worry about weaning her off too soon if it seems like she is still having pain. Glad to hear everything else has gone so well with her surgery, everyday will be a little bit better.

[laurieg6]

My son still tends to look down too much and is working to straighten his shoulders in physical therapy. Your daughter probably still feels really fragile and doesn't want to move her body much at all because of the pain and her probably fears of it increasing with additional movements.

It's great that she got such good correction and I hope her recovery goes very smoothly.