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Old 21-10-2015, 03:09 PM
Mumofscoliboy Mumofscoliboy is offline
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Exclamation Advice for mums please

Hi there.

I've not posted before as we were unsure of what was happening with my son. We went for follow up x-rays yesterday and to see the surgeon. His curve is now 47 degrees, but he has a very large rib hump. The surgeon said he can have surgery in as little as four weeks. I like the surgeon, but would appreciate it if anyone else could advise by pm of the surgeon they has and the hospital. We live in Western Sydney.

My son is 15 and is very happy to be having the surgery as he is very self conscious of his hump and suffers with pain. The surgeon said he will need to have 5 ribs removed, has anyone else's child has this? Does it require a longer stay in hospital/ICU?

Do any mums who's children have had surgery got any suggestions of what I do in the next four weeks leading up to surgery and what to do afterwards. My mind has gone blank as it's so much quicker than I expected. I'm used to surgery, but with my 5 year old, so I'm guessing the list of things to take will be different?

Thank you in advance for any help anyone can give - sorry for the long message, I'm freaking out a bit!

Nat
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Old 23-10-2015, 04:57 PM
happypostop happypostop is offline
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Default Re: Advice for mums please

Hi Nat,

PMed you.

Not sure about the ribs as I didn't have this experience but apparently they did something with my hip for the fusion.

Also I had a little trouble breathing and I believe this was due to my back but all is well now - I don't have issues breathing but I don't do well on cardio exercise either.

Weeks leading up to the surgery... Ensure he is well fed and accumulate anything that'll make his stay at home in particular easier. At the hospital, bring something he can keep himself occupied with if he doesn't have visitors at certain times. Though he will be drugged/in pain and recovering so it might not be too important.

To me, looking back, it's crucial you are comfortable at home. It's hard to even take a shower as you're in pain. You feel abnormally straightened, taller, sore, etc. So make sure he's got easy clothes to get in and out of, things to do, furniture that he cant trip over or anything.
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Old 28-10-2015, 10:39 PM
Mumofscoliboy Mumofscoliboy is offline
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Default Re: Advice for mums please

Thanks for your reply and for your PM's, they were much appreciated!

My son also has a tethered spinal cord so we go to see a neurosurgeon on Tuesday to see if he has the all clear to proceed with the spinal fusion and thoracoplasty. Hopefully it will be a yes or he will have to have two separate surgeries!

If we get the all clear he could have the fusion as soon as the 10th November. It's all happening really quickly. He's really happy with that as he wants to get rid of his pain and rib hump. I'm a little more worried and stressed that it's all so quick, but I guess it gives us less time to get worked up.

He loves his basketball, will he be able to play it again? Also, I've still not come across anyone who's had the surgeon we are seeing. If you've had a western Sydney surgeon, I'd love to hear from you!

Thanks again to the ladies who've PM'd me
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Old 02-11-2015, 10:26 AM
Jan Jan is offline
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Default Re: Advice for mums please

Hi Nat,
I think the lead up to surgery is the most scary thing in the world! This time last year we were in exactly the same position as you - my daughter had a surgery (T4 to L3 posterior fusion) on 5th November 2015 after a very quick lead up to the decision. I was terrified!!!
My daughter was amazing, she was so sure she had to do it and was so committed to the process and I have to say, one year on, we are thrilled with the outcome. She looks great, is feeling happy and is back playing netball and tennis, and she doesn't have any pain. Her scar has faded quite a lot, but is still obvious, but it doesn't bother her - she is happy to wear bikinis and backless tops etc.
It is a very big deal and the lead up and time in hospital is very intense, but I can only say, that it was all worth it, and I do wish you and your son all the very best. My daughter has no regrets what so ever and is so relieved to be on the other side of surgery.
Cheers,
Janet
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Old 07-11-2015, 11:20 PM
Mumofscoliboy Mumofscoliboy is offline
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Default Re: Advice for mums please

Hi Janet.
Thanks for your post. I'm glad to know it's normal to feel so terrified! My son, like your daughter, is also very keen to get the surgery done, he's not in the least bit worried and keeps asking me why I'm anxious about it. I wish I was 15 and still took everything in my stride! I'm glad your daughter is doing so well a year on and it's so encouraging to hear that she is back playing sports too. How long was it till she started back at netball? My son is really going to miss his basketball!
He is now booked in for the 4th December. what are the chances of he being ok for Christmas? We have no family here, but my parents fly in from the UK on the 27th December. So a bit of help with the other children will be welcome.
He also has a tethered spinal cord so we saw the neurosurgeon last week and she said she thinks they'll need to operate on it. She's showing his films to a colleague on Monday to get his opinion. The upside is that she can do her part of the surgery at the same time, so at least it's only one surgery, we did think he'd need two.
I can't think about anything else at the minute, my mind keeps drifting to surgery, I'm dreading it happening, but also can't wait to be on the other side.
I hope a year on we have a positive story to tell like yours!
Thanks again Janet.
Nat.
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Old 09-11-2015, 10:23 AM
Jan Jan is offline
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Default Re: Advice for mums please

Hi Nat,
Wishing you all the best of luck during this time!
She was back to netball at about the 7 month mark - we had thought it would be 12 months, but her surgeon gave her the go-ahead at 6 months so that was great. It all depends on the healing of the fusion, most are pretty solid by then I think.
We found the first 6 weeks after surgery very slow, my daughter was anaemic and this zapped her energy. There was quite a lot of blood loss during the surgery and her HB dropped a lot, she had to take an iron supplement (ferrogradumet) to help her body to regenerate red blood cells quicker, but even so, it took about 6-8 weeks before her energy started to improve. In those first few weeks, she rested a lot, but each day did just a little walk, some little squats, heel raises, arm lifts and slowly increased this. It was about 2 weeks after that she was able to walk down the drive way and back!! It will be slow at first, but then it will improve.
We had a shower chair for the first 2 weeks too, just as it was so tiring for her to have a shower. She was happy to get rid of it after a couple of weeks.
She did a lot of her resting lying on the couch with a comfortable headrest and pillow under her knees and watched a lot of TV during the early few weeks! Boxed set of the OC DVDs helped!
Hope all goes as well as possible with you and your son.
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