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Old 18-10-2010, 08:49 PM
Rach's mum Rach's mum is offline
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Question Back pain issues

Hi everyone!

My name is Sonia and I am very new to this forum thing!

I have a 12yr old daughter Rachael who was diagnosed with Scoliosis in January. She has an 'S' shaped curve with 45 deg lumbar and 37-42 deg thoracic depending on which x-ray you read.

We saw the specialist a couple of months ago and it was his opinion that the thoracic curve had not really progressed significantly (was within margin of error - apparently the way you stand can make a difference) he was not ready to talk surgery yet. We are in this wait and see pattern as we have been all year until her next x-ray in Feb.

Our biggest issue is Rachael's almost constant and quite bad back pain. Most days she is in pain and by the end of the day it can be quite severe and I often have to give her Panadol which sometimes helps. Having been told numerous times that Scoliosis does not cause back pain all I can say is this is definitely not our experience!

She swims which I am sure helps and has been to a physio that recommended Pilates exercises but she doesn't like doing them. There doesn't seem to be a way to prevent or ease this pain. It is a major issue for her (and us) she is often in tears and finds it all very hard to cope with at times.

Does anyone have any similar experiences or any suggestions?

It seems to me that if surgery is deemed not necessary that living with this amount of pain is not much of an option either.

Sonia
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Old 19-10-2010, 12:43 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Back pain issues

Hi Sonia and welcome to the forum. I am so sorry you and your child are going through this. My theory on Scoliosis not causing pain is that (keep in mind I am not a Dr and don't pretend to be), Scoliosis itself does not cause pain (I believe), but it could be something secondary - for eg: degenerative disc, muscle spasms, nerve root impingement etc (Dr Scoliosis help me out if I am wrong here). I say this because, I have met (on another forum) a lot of people with very bad curves, however they are not in any pain. I would suggest speaking to your Surgeon/GP about pain management. I myself had facet joint injections and got much relief in the beginning, but the time span of relief shortened. While i don't think it's great to continually have these injections, I personally feel that they are better than continually taking meds like Panadol etc (its a liver thing!) I did aquarobics and pilates 3 times weekly but quit a couple of months before surgery, because of pain and discomfort. If she can continue swimming, that would be great, as it would help strengthen her muscles. Sorry this is long - but its a mum thing! If you have any questions, please ask. Best wishes and have a great day!
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Old 19-10-2010, 05:22 PM
Rach's mum Rach's mum is offline
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Post Re: Back pain issues

Thanks for your comments.

I agree that the scoliosis itself is probably not causing the pain - that is the bones/skeleton. I am sure that it is muscular. Rach had an MRI when she was first diagnosed which was all clear so we know she doesn't have any underlying issues with her spine.

Her back is quite obviously distorted to look at so I am not surprised that she has muscular pain.

I will discuss this with the specialist when we go next time. I think my trying to sympathise with her is wearing a little thin at times when I can't do anything to fix it. I don't want to keep giving her medication either but sometimes there is no other option.

I must say it is great to 'talk' with others who are going through the same thing. You can tend to feel quite isolated when you don't know anyone else with the same condition.
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Old 20-10-2010, 01:19 PM
Patricia Patricia is offline
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Default Re: Back pain issues

Hi Sonia,

Yes and welcome! This forum is a godsend because as you say, it's difficult to discuss with others who are not in the same position. Unfortunately also.... people will often say "oh I have Scoliosis and I'm fine" Yes yes yes... blah blah... but HOW BAD is your scoliosis? I've given up with the scoliosis title and just say Leash has a spinal problem which needs surgery!

As for the back pain.... Yes, my daughter also had pain before her first surgery. It was more in her rib and chest area as she had marked rotation. Yes, maybe scolisois doesn't cause pain but the stress that the muscles are put under, after being pulled into places they are not supposed to be pulled would surely cause aches.

Our surgeon recently told us this... that if we stood crooked all day on purpose by the end of the day, we would have an awful back ache as well.
Most days for Elysia it was just a dull ache, but somedays it would really flare up to the point where she was in tears and shaking!

So I guess for the time being, heat packs, sitting with support and maybe nurofen, not sure on the nurofen versus panadol, but I figure the nurofen would help any inflamation that was occuring because of aggrevated muscles. Soaks in hot baths also helped Leash. As for Physio, well we could all do with learning some proper excercises to take care of our backs, more so the people with Scoliosis.

Your daughter is only 12, so my personal suggestion is it's not a bad thing to hold off with surgery while you can. She's definately getting up there in the surgery category with the size of the curves you mention and also only being 12, perhaps a lot more growing to do. Have they given you a Risser number yet?

LOL - the wait and see pattern!!! Don't you hate it! You just want this thing fixed or gone!!!! The waiting game is the hardest part of having Scoliosis, everything is so up in the air all the time.

Leash had her surgery 2.5 years ago at age 13 and is heading back for extension surgery of 2 more vetebrae in 6 weeks! Fun and games ahead again! Told her her surgeon should have inserted a zipper the first time around!

Try not to be too depressed about the situation, I know it's all serious but the only way to cope is to try and hold on for the ride and smile a little along the way if you can. There is a WHOLE LOT of worse illnesses that could fall on our babies and we owe it to them to be strong and determined to help see them through this.

hugs
Trish
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Old 26-10-2010, 06:02 PM
Rach's mum Rach's mum is offline
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Post Re: Back pain issues

Hi Trish,

Thanks for the advice. Sorry I have taken a while to reply - life has been busy (when is it not!)
I too have had the 'I have Scoliosis and I'm ok' response a number of times too. I do agree that there are much worse things that families have to deal with and I have mentioned this to Rach to try and help her keep things in perspective.
I wish you and your daughter all the very best for her upcoming surgery and hope everything goes well.

Sonia
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Old 29-10-2010, 10:23 PM
tracy tracy is offline
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Default Re: Back pain issues

Hi Sonia

Im sorry to hear Rachael is in pain. Its so worrying to see our kids in pain? With so little we can do about it...heart-breaking!

Our daughter was in the same boat? Em had surgery last Saturday. Because she was only 9 with such a huge curve we have had to go with staples & growing rods. With a further at least 8 lengthenings & then full rods & fusion when she is fully grown? I would hope Rachael can hold out before having to have surgery?? I know its hard with the pain. We found Nurophen better than Panadol?

Hang in there Sonia!! Hopefully if Rachael does need surgery its only one...with a great correction!! Then no pain!! Its a big surgury but the way to think about it is they will be straight & out of pain??

Best wishes Sonia
Tracy
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Old 29-10-2010, 11:37 PM
tracy tracy is offline
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Default Re: Back pain issues

Also Sonia our surgeon & PICU Drs said after surgery and the spine being crooked for so long...the brain has to re-wire adjust to being straight?? So that re-inforces the reason for pain when the spine is crooked?? All the muscles are pulling where they shouldnt be?? Its logical when you think about it?? Heat/cold packs may help?? Whatever it takes for relief?

Hope that helps
Tracy
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Old 26-08-2011, 05:05 PM
starbug starbug is offline
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Default Re: Back pain issues

I'm sorry that Rachael is in pain. I have pain sometimes when I've been sitting the wrong way, and then it hurts quite a bit, but otherwise, no. The only bad thing is that I often sit the wrong way!
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Old 30-03-2012, 06:17 PM
Bee_babe82 Bee_babe82 is offline
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Default Re: Back pain issues

I just found out I have scoliosis and khyposis by getting my back x rayed I have had very bad pain for years and never new why till now I have unbelievable pain some days it's an ache and sometimes it's so bad I want to cry and I am 29 years old I find hot baths help but after about twenty minutes I'm in pain again some people are saying scoliocsis doesn't cause back pain but then why does it hurt for me and for some others? I'm very confused like you are with your daughter I know how she feels as what you have said it exactly like me and I just found out I have scoliocsis so I'm not really informed on the on the condisition.
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