does anyone have progressive scoliosis?

tronlegacy

Do you get a lot of pain from scoliosis? is it just in your back?are you in pain when sitting?how do you cope?
My teenager has severe cerebral palsy and,among other problems,progressive scoliosis(deemed unfit for surgery).
He has to wear a back brace as he cant sit upright without it and he does seem more comfortable with his brace on,however he seems to be in a lot of pain while sitting.Through the process of elimination we now think the pain is coming from his back.
My son cant talk or indicate where the pain is,hence my question.I dont know anyone with progressive scoliosis to ask these questions so thought i would ask here.thanks in advance:)

georgim

Hello! I have actually had the operation so am in a different situation but a lot of the pain I had/get is actually muscular. How severe is his curve? Also what hospital does he go to? I find things like ibugel really good (is pretty cheap) I also see my osteopath a lot, he is FAB and a real life saver. I also have a massage say once or twice a month, with scoliosis I find it affects a lot of other areas, for instance my hips (I get a trapped nerve)my legs get very tight and this pulls your back. Also my neck gets 'locked up'. Does your son have physio? If he does it's better to see a specialist as normal physios aren't so sure on what to do in my opinion! Anyway - i think I have more pain after my operation but I guess we'll never know what is best. I hope this helps a bit!

tronlegacy

georgim wrote: »

Hello! I have actually had the operation so am in a different situation but a lot of the pain I had/get is actually muscular. How severe is his curve? Also what hospital does he go to? I find things like ibugel really good (is pretty cheap) I also see my osteopath a lot, he is FAB and a real life saver. I also have a massage say once or twice a month, with scoliosis I find it affects a lot of other areas, for instance my hips (I get a trapped nerve)my legs get very tight and this pulls your back. Also my neck gets 'locked up'. Does your son have physio? If he does it's better to see a specialist as normal physios aren't so sure on what to do in my opinion! Anyway - i think I have more pain after my operation but I guess we'll never know what is best. I hope this helps a bit!

His curve was about 50 degrees 2 years ago and has gotten worse since then(waiting to see doc as hes not been seen since surgery was ruled out).
Son already had problems with his hips and muscles due to his CP and he gets baclofen to help relax his muscles.He attends a special needs school where he gets regular physio ,which does help with some areas.
Sorry to hear you are still in pain,it must be very difficult after going through lengthy surgery and recovery to find you are still in pain.
thank you for replying:)

georgim

Mine was about 50 degrees I think so I wonder why they are ruling it out? In all honesty it is such a traumatic experience, I have suffered with lots of additional problems since (post op depression and v bad anxiety) so if he gets on with the brace it may not necessarily be a bad thing. I hope you manage to find something to help him... poor guy :0(

Georgi x

tronlegacy

surgery was ruled out as he suffers from breathing difficulties along with other health issues so surgeon did not want to take the risk.
Think it was probably the right decision,just a pity he cant sit without pain now as he is a permanent wheelchair user so the pain is causing lots of different problems.

GlasweJen

Tron can you gt his wheelchair cushion reassessed? I didn't realise how diverse the cushions were until parva posted about the one he has that accommodates for a missing half of pelvis.

wattdallas

tronlegacy wrote: »

Do you get a lot of pain from scoliosis? is it just in your back?are you in pain when sitting?how do you cope?
My teenager has severe cerebral palsy and,among other problems,progressive scoliosis(deemed unfit for surgery).
He has to wear a back brace as he cant sit upright without it and he does seem more comfortable with his brace on,however he seems to be in a lot of pain while sitting.Through the process of elimination we now think the pain is coming from his back.
My son cant talk or indicate where the pain is,hence my question.I dont know anyone with progressive scoliosis to ask these questions so thought i would ask here.thanks in advance:)

Hi my daughter had a 82 degree curve and was in pain and lost a lot of weight she too is disabled.it must be painful or at least really uncomfortable as your organs are getting squashed.Her operation too was very traumatic for her and us as she had 3 infections which required full clean out and a screw taken out.

tronlegacy

GlasweJen wrote: »

Tron can you gt his wheelchair cushion reassessed? I didn't realise how diverse the cushions were until parva posted about the one he has that accommodates for a missing half of pelvis.

His wheelchair was the first thing we had checked as he had a growth spurt and it wasnt providing the support he needed so he now has one that has cushions moulded to his shape and the back cushion has been changed to accomodate his back brace.
thanks for replying:)

tronlegacy

wattdallas wrote: »

Hi my daughter had a 82 degree curve and was in pain and lost a lot of weight she too is disabled.it must be painful or at least really uncomfortable as your organs are getting squashed.Her operation too was very traumatic for her and us as she had 3 infections which required full clean out and a screw taken out.

I had wondered if it could be internal pain due to the organs being squashed or if its trapped nerves in the back.
We can only guess and we always start with the simplest of problems first then start eliminating from there.Very frustrating and heartbreaking:(
Hope your daughters operation helps her in the long run.Getting the operation must have been a huge decision for you to make.In a way,im glad we didnt get the choice as we really struggled with trying to decide what would be best.:)

wattdallas

tronlegacy wrote: »

I had wondered if it could be internal pain due to the organs being squashed or if its trapped nerves in the back.
We can only guess and we always start with the simplest of problems first then start eliminating from there.Very frustrating and heartbreaking:(
Hope your daughters operation helps her in the long run.Getting the operation must have been a huge decision for you to make.In a way,im glad we didnt get the choice as we really struggled with trying to decide what would be best.:)

I know about the guessing ,its so hard when they cant tell us ,yes very heartbreaking .

Yes a huge decision and she was 8 yrs old ,so young.It has made a remarkable improvement for her but she and i went through hell and back,really thought we could lose her.I never want to her to go through that again.

Yes your right Tron ,sometimes having the decision taken away from yourselfs can be a relief.

Best wishes to your son xxx