Scoliosis Surgery for my 12 y/o - please can anyone let me know if they have had similar?

[BlueBumedFly]

It sounds like a real soap opera at the moment but this is all real, I am not trolling or whatever you call it.

In the midst of (Step)DD2 (10 yrs) being on a peanut desensitisation study and DD3 (1 year) having had reflux (Step)DD1 (12yrs) is now facing spine surgery for scoliosis within the next few months.

Please can anyone tell me about what we can expect? Saw the surgeon yesterday who has said she needs 2 ops, one to remove a rib then a week later the discs will be fused and the pins put in. Scheduled for a CT scan in a week or so to check there are no other issues before they start.

Can anyone let me know about recovery times? How long she will be off school? OMG, so scary. She is so sweet though and being ever so brave. When the surgeon asked if she had any questions she said 'yes, will I be asleep during the operation'... bless her! Her only point of reference is my C-section and she knew I was awake but didn't understand the spinal block of course.

HELP! What a year!!!!

Sorry, can't help, but I am surprised they are operating this young. My sister has scoliosis and was told to wait until she'd finished growing. She chose not to have surgery in the end, but then, it wasn't impacting on her quality of life.

Bless her - re: the operation! Its good that she's cool with it.

I don't knowhow much help I can be, but I had scoliosis surgery at 12 (in 1982)
I had a Harrington rod, which is different to what your dd is having, and the bone grafts were taken from my hip at the same time, so only one surgery.

Or is the rib removal because her spine is already badly out of shape?

My memory of it is that I had no pain, but do remember being given pain relief injections for the first two days after surgery.

I was bedbound in hospital for a week/10 days,then put in a full body cast for 6 months.

It took a while to get mobile again, and I needed bigger clothes to fit over the cast, then I was off school for about two more weeks.

It was very hot, and I couldn't have a proper bath, which was the thing I disliked the most. After 3 months it was removed, I had a bath and a new cast.

I can look up a link to the scoliosis website if you want it, and I'm happy to try and answer any questions you may have.

My strongest memory of it all is that my parents were totally relaxed about it. They were obviously very good actors, but it kept me calm and relaxed, too.

Ooh, a bonus for me was that I came out of surgery a full two inches taller

Jas my goodness, a full body cast? Good grief how dreadful for you.

I think as parents we are good actors, we are very calm with DD then panicking like mad once she is in bed.

They are removing a rib so they can access her spine, it looks something like a numbr 3 - very bad and needs surgery in the next 6 months before she stops growing, I am guessing they have changed the way they think now.

They have told us the rib will grow back and she will be very tall (DH is over 6ft)!

The surgery was still quite new when I had it. Most people were treated with a brace that you had to wear for years. I was lucky that I happened to live near Addenbrookes at the time.

The only problem with the cast was the heat, and the embarrasment factor.....when they took it off, I suddenly had breasts

There are definitely other parents here whose children have had more recent surgery, but they have had other problems too and were posting mostly on the special needs boards

My best friend's parents chose not to put her through it and her scoliosis went on to get a lot worse, and it became too late to do the surgery. Sorry to post something so miserable, and I'm sure you have been given all the information. But she has always felt very sad that they made the decision to help her in the short term not the long term, although she understands their decision totally.

One of the beautiful All Saints girls had this surgery and has laughed about how she was teased at school with people putting magnets on her back. This isn't supposed to be a miserable thing - what I mean is, she very quickly recovered and got gorgeous and became a dancing pop tart.

Thanks EBenes, DD is being very brave and amazingly pragmatic for one so young. She has to have the surgery as she is already developed quite a pronounced hump which she is dreadfully embarrassed about.

We have been told that a brace would do no good and I have seen the x-rays, believe me it needs the surgery.

Jas - we are at Addenbrookes every other week as DD2 is attending a clinical study on peanut desensitisation!

I am still very asymmetrical to say the least, but I was at risk of developing breathing problems with mine, and it stopped it getting worse.