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Scootaloo

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Does anyone here have experience with Scoliosis?


We have just had 15 yo old DD diagnosed and have had a back brace recommended for treatment. Wondering if there is anyone else here I can chat to about it?

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Julie3Girls

My Dd2 was diagnosed with scoliosis at 12.5. Bracing wasn’t an option, she ended up with spinal fusion just before her 14th birthday, she’s now 17.


I remember how incredibly scary it seemed when she was diagnose, happy to talk or listen.

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This is my first post on the new site.


My 12 year old daughter was diagnosed with scoliosis just before school started this year, we did not notice at all until then that she had a lump on her back when she bent forwards.


She has a 71 degree curve and her only option is spinal fusion surgery, which is scheduled for this Monday!


Julie3girls, I would love to know how your DD2 is doing since having the spinal fusion.


She does not seem worried about the surgery, taking it in her stride and determined to be able to jump on a trampoline in the future.


Scootaloo, I hope the bracing will help with your daughter.

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Chicken Pie

not personally but my friends daughter - she is 14 - had bracing but didnt work and ended up having spinal fusion surgery about a year ago or less, she is going great now and happy, no pain, back in school and slowly getting active again

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Julie3Girls

[mention]Peachkoala[/mention] huge hugs to you, I remember so vividly how I felt right before surgery!!!


Hard to know where to start other than it WILL be ok!!! The way these kids recover from such a major surgery is awe inspiring.

And life will go back to normal.


Dd2 was almost 14 at surgery time, curve was 68degrees. 3 and bit years later, honestly, you’d never know she has rods in her back. Not saying it is all roses ... she does still get some muscle issues that are scoliosis related, and we are currently doing massage therapy once a month to help out during this year - yr12, so lots of seated study time, bit more stressed, and that does flow through to her back as muscular pain.

But she dances 3 days a week, and has so much flexibility and ease of movement that she actually needs to remind her teachers at times that “no she can’t bend backwards like that, you know, metal rods?” 😆

Most importantly, she has absolutely no regrets about the surgery.

She also gets a great deal of enjoyment out of freaking people out by showing them the xrays - she has a photo of the xrays on her phone, initially just of her curves, then the post surgery ones showing the hardware. I gave them to at first so she could show teachers at school if there were any issues getting excused from activities. But she loved seeing people’s faces “that’s your back? How do you even stand up??”


A heads up for the surgery ...

First 2-3 days were horrendous. Disbelief that I had let them do this my daughter. Those first days are so hard, especially when you need to force her to get up and move. On the positive side, she doesn’t really remember much at all from the first couple of days.

And it DOES get better


Keep on top of the meds - there are no prizes for getting off the meds earlier, if she needs them, use them. Pain free means able to move, able to move means better recovery.


Recovery is not forever, even if feels that way, Dd2 was back in the dance studio at 12 weeks!


Feel free ask absolutely anything you like ... being able to ask questions of people who have been through it helps a lot.

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Kiwi Bicycle

I have no personal experience but I remember reading Judy Blume's Deenie ( oh my gosh, written in 1973!), which was a great book about a girl dealing with it and a back brace.

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[mention]Julie3Girls[/mention] thanks so much. I am freaking out at the moment. I have periods of crying as I hate that she will go through this, but know this is the best course of action.


I have had back surgery myself so I know that I will have to make sure she gets up and moves! I plan to take her to the warm water pool when she is allowed for water walking.

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Julie3Girls

@Julie3Girls thanks so much. I am freaking out at the moment. I have periods of crying as I hate that she will go through this, but know this is the best course of action.


I have had back surgery myself so I know that I will have to make sure she gets up and moves! I plan to take her to the warm water pool when she is allowed for water walking.

It’s always hard .. doesn’t matter how much you know it’s right.


Pool will be great - we were lucky enough to be able to time dds surgery for end of November. Minimal missing of school, with recovery over the summer holidays. So we definitely made use of our pool once she was cleared for it.


Just remind yourself, this time next week, the worst will be behind you.


On Monday, do try and get yourself out of the hospital once she goes in - the wait feels like forever. We actually headed to the nearby shopping centre, bought some treats for her for during the week (she scored well due to emotional mummy), had dinner, before heading back. And then still had another two hours waiting before she even got into recovery.

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Wow! There are a few of us, so glad I am not alone here.


At this point we know DD has it and her curve went from 34 to 37.5 in the space of a month. Growth scans show that even at 15 she still has a lot of growing to do yet, hence the bracing option.


We just don’t know where to go from here. We were seen at the RCH Melbourne and now just wait for a spot for a brace with them or we can look at going private and potentially have the brace within weeks instead. Also there seems to be different styles of braces available and we don’t know enough to ask the right questions in regards to which would give her the best chance for success 🤯


Do others use a regular physio or massage to help with the associated back pain? We asked at the appointment but just got told to not let anyone manipulate her back at all.


Has anyone used the brace but ended up with surgery anyway?


Thanks so much in advance, I feel like I wish I could just upload to my brain all the information I need because I am so confused by it all

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Is a GP the first port of call for a diagnosis? My DD has suddenly developed very poor posture and it's been put to me that it might be scolosis. DH thinks I'm being a drama queen but I think I want to follow it up....

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Is a GP the first port of call for a diagnosis? My DD has suddenly developed very poor posture and it's been put to me that it might be scolosis. DH thinks I'm being a drama queen but I think I want to follow it up....

 

Very first have her bend over and touch her toes, run your fingers up her spine, does it feel like a straight line? Then GP for an x ray

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Is a GP the first port of call for a diagnosis? My DD has suddenly developed very poor posture and it's been put to me that it might be scolosis. DH thinks I'm being a drama queen but I think I want to follow it up....

 

Yes it was for us. We noticed that her body was uneven and had a significant rib hump when bending forward. The GP sent us for an x-ray and we went from there.

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Julie3Girls

For self assessment

https://www.scoliosis-australia.org/policies-programs/self-detection-fact-sheet/


I actually sent the leaflet to the high school, with a request to help get the information out there, but never heard back.


GP for an X-ray referral - ask about an EOS scan. It’s available at some X-ray locations now, it’s low radiation, and does full body in one scan. So much easier and quicker. And if there is a problem, you definitely want the low radiation, because the xrays mount up.

Edited by Julie3Girls
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Julie3Girls

Wow! There are a few of us, so glad I am not alone here.


At this point we know DD has it and her curve went from 34 to 37.5 in the space of a month. Growth scans show that even at 15 she still has a lot of growing to do yet, hence the bracing option.


We just don’t know where to go from here. We were seen at the RCH Melbourne and now just wait for a spot for a brace with them or we can look at going private and potentially have the brace within weeks instead. Also there seems to be different styles of braces available and we don’t know enough to ask the right questions in regards to which would give her the best chance for success 🤯


Do others use a regular physio or massage to help with the associated back pain? We asked at the appointment but just got told to not let anyone manipulate her back at all.


Has anyone used the brace but ended up with surgery anyway?


Thanks so much in advance, I feel like I wish I could just upload to my brain all the information I need because I am so confused by it all

 

Personally, I’d be trying to find out what the wait is for public, and if it’s considerable and you can afford it, I’d go private and get the brace as soon as possible.


The jump from 34 to 37.5 in a month ... you are actually still within the error margin, it can be up to 5 degrees plus or minus. Different people can get slightly different measurements of the curve, on the same X-ray. And there is a small amount of variation depending on how they are standing etc.


Can’t help with bracing ... we didn’t brace. Found her curve at 43, high thoracic. Progression scan after 8-10 weeks showed a jump to 53 degrees, so doctor said bracing wouldn’t work for her.


Physio .... yes yes yes. A lot of surgeons will tell that physio is pointless. Some will also tell you that scoliosis doesn’t cause pain 😡. Possibly right in that the spine itself doesn’t hurt. But all the muscles being pulled out of alignment definitely DO hurt,

And that is where a good physio is a godsend. Pre surgery, physio for us balanced her hips, and reduced tension and pain. Both through massage and specific exercises.

After surgery, we were back at physio at the 6wk mark. Physio helped with core strength before the surgery’ and after, made a huge difference with her recovery,

Actually, being in Melbourne, I would look into Schroth physio, there is likely to be some in Melbourne. It’s basically scoliosis specific physio. Would have loved to do it with my daughter but nearest was hours away,

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Thank you Julie3girls. It is reassuring to know I am not alone here.


We are actually in regional vic so no specialist physio here, but will book her into my physio to at least get her on the books etc.


We are considering our private option as well as I think the wait for services at the RCH could be significant, and just today had a clinic reply with an assessment on the same x-ray as her having 2 curves reading at 49 and 45. So we are at a complete loss of what to do. Their figures are significantly higher, yet it was exactly the same x-ray. So at this point to cover our bases, we are having an initial consultation with this clinic for a second opinion - thankfully they can fit us in next week.

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Julie3Girls

Wow, that’s a big difference in xrays reading! So glad you have been able to get an appt soon.


That size curve is really pushing up into the surgery range - basically once the curve hits 50, it’s been found that the curves continue to increase, even after growth has stopped. Curves under 40 will often stay stable. With 40-50 being a grey area.

So probably worth looking into surgical options too. Spinal fusion has been the standard, but over the last few years, some surgeons have started doing vbt (veterbrae tethering), which allows them to retain flexibility in the spine. Yes, more decisions ... again, can’t help much as vbt was only just starting up in Australia when we were making decisions.


If you haven’t looked already, check out Facebook for scoliosis groups - search for Australian Scoliosis support, or scoliosis support - Australia. The groups are fantastic, people from all over the country, so you’d be able to get advice on specialists etc local to you.

** never mind, just saw your post on Facebook! Lol

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Hills Mum Bec

For self assessment

https://www.scoliosis-australia.org/policies-programs/self-detection-fact-sheet/


I actually sent the leaflet to the high school, with a request to help get the information out there, but never heard back.

 

 

Do they not do the checks at high school anymore? I remember when I was in year 8 or 9 having to line up in the girls change room and bend over in front of the female PE teacher for her to check our spines.

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Julie3Girls

For self assessment

https://www.scoliosis-australia.org/policies-programs/self-detection-fact-sheet/


I actually sent the leaflet to the high school, with a request to help get the information out there, but never heard back.

 

 

Do they not do the checks at high school anymore? I remember when I was in year 8 or 9 having to line up in the girls change room and bend over in front of the female PE teacher for her to check our spines.

 

No checks, at least not in public schools. From what I from other people on Facebook groups etc, no checks in any schools. Considering how little time it takes, I don’t understand why they can’t do it. They do yr7 vaccinations, why not walk them past a nurse on the way in?


We found dd2’s when we did a pre pointe physio checkup,

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If you haven’t looked already, check out Facebook for scoliosis groups - search for Australian Scoliosis support, or scoliosis support - Australia. The groups are fantastic, people from all over the country, so you’d be able to get advice on specialists etc local to you.

** never mind, just saw your post on Facebook! Lol

 

LOL yep, that’s me, have a bit of a melt down panic attack over there 😂

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Julie3Girls

[mention]Peachkoala[/mention] hope the surgery went well today! Hang in there over the next couple of days, you are now moving in the right direction, every day a little bit better!

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[mention]Julie3Girls[/mention] thankyou. Surgery went well. She has been back on the ward for an hour. Uncomfortable, but a reminder to press the button for pain relief usually helps.

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[mention]Peachkoala[/mention] glad to hear today went well for you. Will be keeping you both in my thoughts for the next few days xx

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  • 1 year later...

I just found this thread, hope it's ok to start it up again.

Just wondering how everyone is going, and wanted to share my story.

My DD was diagnosed with scoliosis last August, curve 49 degrees plus a 3cm rotation. She is 11. The dr wanted to operate but her bone age scan showed she still has so much growing to do so she is in a brace first, trying to buy some time. She will most likely need surgery at some point.

It's hard to get her to the required 16-20 hours a day in the brace but she is doing really well with it, I'm so proud of her.

I hope everyone else is doing well.

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Glad to hear she is doing well with the bracing - so hard for these kids, it’s a big ask of them.
Have you spoken to the doctor much about surgery? At that age, still with growth, I wonder if VBT would be an option for her? (Which ideally is when they are still growing) Rather than fusion? 

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