Scoliosis, Back Brace and GAC

[Lovin' Lorne]

I had/have scoliosis myself and remember what a pain that back brace was. My curve is smack in the middle of my back, so the braces I wore always seemed to come down right on my hipbones. It wasn't much of a problem in school, but I can remember it being slightly uncomfortable sitting on some of the rides. The brace would actually rest on the seat, which sort of pushed it up a bit on my body, causing the need to sit at some strange angles on a few things. So while I don't know your DD's exact circumstances, she might want to be aware of that possibility.

 

[luvyawdw]

Thank you Janell. Your advice is well taken. Beth is in physical therapy right now 3 days a week, she really does not like going at all but I know it is best for her. I also know that we will need to keep her in a program as she grows, If not Physical therapy, an excersice program with a trainer or some sort of instructor like you mention you do. She is really uncomfortable and it has been almost 6 months since her surgery. She is gaurding her postions and movements because she is afraid of hurting herself.
She is having surgery on this Tuesday to lengthen her contractures. She was in traction 6 months before her back surgery and from not weight bearing or walking she became tight in several areas. She has not walked since her back surgery I pray that on Tuesday, our Bethany will be standing........and then soon walking! This has been a very difficult experience for her.
I certainly do not want to frighten anyone that may need spinal surgery especially disalways. Bethany had a complication during her surgery that her doctors are still investigating ( reviewing surgery notes from the OR). She woke up from her surgery unable to see, she explained all she could see was white. For several days everyone in the ICU felt is was medication and it would improve as she was weaned off. We spent 28 days in the ICU, she did not have much improvement, she tested 20/200 in August, leagally blind. She always had 20/20 vision with her glasses. The doctors explained she suffered irreversible damage to her optic nerve and retina during surgery. Her "OR" surgery notes comment " no complications", so they are still trying to identify how this happened. Beth was devestated, as were we. We had never heard of this happening. According to them, it is very rare and that is why it is not in the informed consent. The neuro-optemologist said " there is nothing you can do about this in the year 2007" which was also unbelieveable to me! I got in the car with Beth and said, Well, were not going to just accept that,we are going to hope and pray. She was really quiet and said "mom, Im just happy to be alive" . I am so grateful to report her last vision test in November revealed an improvement to 20/70 with corrective lenses! The Doctor said she may still improve As I am writing this she is playing her piano, reading music, and loving it! When she was in the ICU, childlife brought her a keyboard to play her music to try and cheer her up, she cried as she struggled to see her music. She stopped and said "I can't even read music anymore".
She is reading her music, she is playing "So Close" sung by Jon McLaughlin (From Disneys Enchanted) in her 8th grade talent show. Im so very happy for her.
Sorry everyone this is so long.....We really have not had much oppurtunity to discuss this with others.
Sue, I know you mentioned you are a nurse, have you ever heard of this happening?
Very sincere wishes to everyone,
Lisa

 

[disalways]

Thank you so much everyone for all of your ideas... especially thank you to luvyawdw... Your suggestions are very helpful. I also had/still have scoliosis. I wore a brace from the age of 12-17... I have three curves, but they are not nearly as high as my dd's are. She is very very close to needing surgery... and having surgery to have metal rids put in. I cannot begin to tell you the guilt I feel at having given this to my dd. I have back pain myself, but I think I have just learned to deal with it all... But my dd, she is only 13... and her curves are worse than mine right now as an adult. I really, really appreciate everyone's thoughts here... especially those who have lived with scoliosis closely.

Janell, do you always bring your own pillows? or do you sometimes ask housekeeping to send more? Can you tell me more about the blow up bed? How do you set it up? How do you not slide off teh blow-up mattress when you place it on a bed? Is it the regular kind of air mattress? I've never tried this before, but I think it would make my dd sleep better. Heck, I would be happy to try this.

Lovin' Lorne, thank you for your thoughts on the brace touching the seats, I will be very conscious of this with my dd.

luvyawdw, you and your sweetie are a true inspiration to me and my sweetie. I am so happy to read that Bethany has regained her sight... honestly your post about what she said to you regarding not being able to see after her back surgery and how happy she is to be alive had me in tears... and really put things in perspective for me. Thank you so much for sharing.

Janell (again ), I have wondered about physical therapy for my dd. I do not understand why her orthopedist has not suggested this for her. I will ask at the next appointment.

Thank you all for your ideas.