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daznsara
Guest
hiya, hope im in the right place 
I have a an almost 4yr old little girl who has a 'gibbus' at the bottom part of her spine..for anybody not familiar with the term, her l4 vertebrae is wedge shaped and wearing slowly away causing a bump to her lower back. She has an approx 40% curve to the lower part of her back and it causes differing amounts of pain on different days as happens with lots of people with back/spine disorders. as it is so rare she has been tested for mps as it is a typical symptom of some metabollic disorders but apparently she does not have it..so our childrens specialists are saying. her spinal surgeon has said on every visit that he would bet his career she has. problem is, is that post op...due anytime now to remove 2 discs, burn off damaged vertabrae and pin and strengthen her spine....she will be in a body cast for 3 months as long as she doesnt have mps. if she does in fact have it it can affect bone repairing itself and could take upto a year to mend. i dont know a soul and have never heard of anybody having this done, adult or child, and info in the uk is very limited. nobody seems to know whether this op will cure her pain and problems or if it will continue. its been a waiting game for the last 2 years that weve known about it and its very frustrating when she doesnt have time...if its left another year with out being operated on the damaged vertabrae will start to affect her spinal cord and we really dont want that. but at the same time its very hard to let a little girl go theough this without any reassurance of how much she will suffer during and after surgery. our orthopaedics hospital is more for adults than children and dont seem to take parents fear or worries into consideration. to be honest i wish it wasnt happening to us. we have 6 other children and this has been a nightmare for so long for all of us. sorry to rant but has anybody had anything remotely similar?????? thankyou
I have a an almost 4yr old little girl who has a 'gibbus' at the bottom part of her spine..for anybody not familiar with the term, her l4 vertebrae is wedge shaped and wearing slowly away causing a bump to her lower back. She has an approx 40% curve to the lower part of her back and it causes differing amounts of pain on different days as happens with lots of people with back/spine disorders. as it is so rare she has been tested for mps as it is a typical symptom of some metabollic disorders but apparently she does not have it..so our childrens specialists are saying. her spinal surgeon has said on every visit that he would bet his career she has. problem is, is that post op...due anytime now to remove 2 discs, burn off damaged vertabrae and pin and strengthen her spine....she will be in a body cast for 3 months as long as she doesnt have mps. if she does in fact have it it can affect bone repairing itself and could take upto a year to mend. i dont know a soul and have never heard of anybody having this done, adult or child, and info in the uk is very limited. nobody seems to know whether this op will cure her pain and problems or if it will continue. its been a waiting game for the last 2 years that weve known about it and its very frustrating when she doesnt have time...if its left another year with out being operated on the damaged vertabrae will start to affect her spinal cord and we really dont want that. but at the same time its very hard to let a little girl go theough this without any reassurance of how much she will suffer during and after surgery. our orthopaedics hospital is more for adults than children and dont seem to take parents fear or worries into consideration. to be honest i wish it wasnt happening to us. we have 6 other children and this has been a nightmare for so long for all of us. sorry to rant but has anybody had anything remotely similar?????? thankyou