Didn't even notice

[MOTCA]

My 16 year old daughter has never been sick a day in her life, she doesn't play sports, and I never took her to the doctor after age 8 for check-ups. She goes to a private school that does not have scoliosis screenings. I can remember that feeling in the pit of my stomach when I noticed her shoulder blade was sticking out and asking her to stand up straight for me. (How can I not have noticed!). The initial screening showed curves of 48 and 63 degrees although the orthopedist surgeon said he calculates a bit higher than that. She was already just barely full grown. We knew we didn't have much of a choice, that as she got older, the curves would worsen. Two months later she underwent a 7 hour surgery and a small extention six months after that. She recovered well and her spine is amazingly at almost 100% straight. I am so relieved that she has never had back pain (except for the surgery recovery) and she can stand straight and tall like her (fraternal) twin sister. Because it all happened so fast, I get small bouts of "post traumatic Mom stress syndrome" (my own coined word) that feels like "GASP, what did I do to my child?" I'm sure with yearly check-ups by her surgeon she will do fine in the next 10, 20, 30 years, but does any one know of consequences of rods in the back in the Over-the-hill years of 50, 60, 70 plus? I won't be around, but I need to know she'll be OK.
PS This July will be one-year since second surgery.
--Mother of Twins in California

[scoliboymom]

Our stories are similar except my son is getting his surgery next week ten months after first diagnosed. I know it is the right thing to do but I am already getting those feelings of 'Gasp what am I doing to my child" and my biggest worry is that I will feel the same as you after the surgery. After all once it's done you can never go back. And I do definately worry about the long term down the road when we will no longer be there to protect them. I think one reassuring thing is that medical improvements are happening all the time. And so who knows what great advancements will be made in the years to come, all for the benifit of our children when they are older. The other thing is that I think in reality most people who have surgery never have any problems and have no need to be on this forum and so we only see the few (relatively speaking) who do have issues after surgery. It would be nice to hear from those who have never had any problems after 30, 40, 50 years more often. But I know why they are not here, 'cause they are too busy leading happy carefree lives. So think along those lines.
Glad your daughter is doing so well in her recovery.
Take care
Ramona

[lnetzer]

Just wanted to put in my 2 cents......my son had surgery last July and is now nearly 10 months post op. I researched the heck out of everything, maybe getting too much info, and worried that we were making a rash decision being that he was only diagnosed in January '06. Looking back now the waiting was by far the worst, and these kids are so resilient, they bounce right back. My son even got out of the hospital one day early. His surgery was supposed to be 6 hours, and ended up being 11 1/2 hours, but she got a better correction and we were told every 2 hours like clockwork by a nurse what was transpiring. Know that you are doing the right thing! We went for our check up last week and the surgeon said he looked like a million bucks. Every time we went he was better and better, and I don't regret this decision at all. The only problems he has had since were when it was wicked cold out (we live in northern Michigan) he would be a little stiff and sore, but nothing a little activity wouldn't take care of. The way I look at it, it is something that needs to be done anyhow once you hit curves of certain degrees, it's better to do it now when they're young that to have them have to go thru this in adulthood. Hope this makes sense!

[MOTCA]

Thank you for your input. The kids are very resiliant, I agree. And I know it was the right decision. In a way I'm glad my daughter didn't have to go through the brace trauma -- it would have been hard on her. Best wishes for your son and his surgery next week. What I wanted to say is that they don't seem like themselves when they are on the heavier drugs the first day or two right after surgery. But the minute they are off the stuff, they perk right up and that's when the real relief comes in!

I had a side story too. Right after my daughter's second surgery last summer, I was promoted to a different position at work (I work part-time). My new co-worker is around 55 yrs. old and has scoliosis that was never corrected. Daily I'm reminded what it would be like to live without surgery. I don't know how severe her curves are -- she said she never got them measured. But I do know her skirt hems are off by a few inches on one side. She tippy toes on one side to help keep her even. She usually takes the elevator to go one floor because she feels too unbalanced to take the stairs. I wonder if her curves are stabalized or if they have always been getting worse. . . Anyway, she lives with it and still has a full life. She says she's a bit sorry they didn't know what to do with it when she was young. Every case is different -- progression and affects on the lungs, etc.

[rainbow2010]

My mom asked me if I regretted that she made me have my surgery. I told her no. My daughter has days that she wishes she didn't have the surgery, but I told her she would out grow those feelings! I had to have a second surgery shortly after my mother was siagnosed with cancer and had to have surgery, so we took care of each other. That's when she asked me about having my first surgery. I am glad that my current more serious problems developed after she passed away so she wouldn't feel guilty. Just remember, that you did the best thing for your daughter. She will be able to live longer and with less pain because of having her surgery.

[flowerpower]

I think Ramona was right in saying that probably most people have successful surgeries and don't have a need to go on the forum. I know of two ladies in my town who have had spinal fusion for scoliosis at age 12. One is about late 30's/early 40's, is a schoolteacher and has 3 children. The other, works at a local grocery store, is about 25 and just recently had her first child. They both seem to be doing very well and have said they haven't experienced any problems.

Renee

[MacksMom]

Renee,

My daughter was recently diagnosed and I am considering taking her to Dr. Newton at CHSD for a second opinion. Your son had his surgery there. Were you pleased with the surgeon and the care your son received? We live in Orange County.

Thanks.

Lisa
(mother of Mackenzie - 40 degree thoracolumbar; 28 degree compensatory thoracic curves)

[flowerpower]

Hi Lisa,

Dr. Newton is my son's dr. and I highly recommend him. I found him personable, forthright, and willing to take the time to answer any questions we had. I liked that he spoke to my son on his level and made sure he understood everything (as much as he wanted to know). My son had complete trust and confidence in him, and so do I. I believe he does about 120+ surgeries a year. His staff is great, helped us through all stages of paperwork. I always received a timely response to e-mail questions. They have the patients take a tour of hospital a week before surgery, from check-in to recovery room. They also showed us the various equipment Joe would be hooked up to, even a model of the spine with instrumentation. I thought it was a great way to help prepare, for us it lessened the shock factor. The staff at Childrens was wonderful (with exception of 1 bad nurse The pain management team came in every morning to monitor pain and adjust meds if necessary. If there is anything else you would like to know, just ask. I thought they were great and feel fortunate my son had treatment there.

Renee

[MacksMom]

Thanks so much Renee. I saw a video clip of Dr. Newton and I really liked his "affect". I'm taking Mackenzie to a doc at Children's LA as well (so 2 second opinions).

We liked the surgeon we originally saw - but UCI is not dedicated to children - although they treat both adults and children. I'd really rather have Mackenzie treated by a physician who limits his/her practice to children. The doc at UCI did an adult spine fellowship followed by a pediatric spine fellowship (at Miami Children's), so his credentials are good. It's just the peds only thing.

Again, thanks so much for the info. I'll let you know when we see Dr. Newton. Mackenzie gets her TLSO brace tomorrow - and I'll pick up her x-ray from the orthotist at that time. Then I'll make the two second opinion appointments.

Lisa

[flowerpower]

Lisa,

That was one thing that pleased me about Dr. Newton/Childrens Specialists. The whole practice is dedicated to treating children. Dr. Newton also did a pediatric spine fellowship at Texas Scottish Rite Hospital. He is the Director of Orthopedics at Childrens Hosp. and is also affiliated with UCSD. During Joe's surgery he had a resident and another dr. on fellowship assisting, so he trains other surgeons. Let me know if you have a consult with him, I'd be interested to hear how everything went.

Renee