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MY ELDEST Grandson is 12 and suffers from DMD
MY ELDEST Grandson who is now 12 and suffers from DMDhad a spinal x-ray last week and we were told that his curvature is now at 20% and is going to get steadily worse he has another x-ray in 6 months and have been told he will most likely need the operation,we were also told that it is better to have the operation sooner rather than later could anyone give any advice on this please
Re: MY ELDEST Grandson is 12 and suffers from DMDHi supernan, welcome to TalkMD.
I’ve created a new thread for your post so it’s easier to find. And I’ve let our Care & Support team know about your query, so they will be replying soon.
Sam
Re: MY ELDEST Grandson is 12 and suffers from DMD@supernan wrote:
MY ELDEST Grandson who is now 12 and suffers from DMDhad a spinal x-ray last week and we were told that his curvature is now at 20% and is going to get steadily worse he has another x-ray in 6 months and have been told he will most likely need the operation,we were also told that it is better to have the operation sooner rather than later could anyone give any advice on this please
Haha, it’s my Mummy! (How did I know??)
Mum, I would go for this option it would be better in the long term as the scoliosis (curvature) progresses this will impact on Damon’s respiratory function which will become impaired as the condition begins to affect the muscles used for breathing.
I will get some information for you next time i am down, thankfully am better so I can get out of the house!!! Be down Thursday!
Love and hugs
Nicci xRe: MY ELDEST Grandson is 12 and suffers from DMDyes i know all that we just want other peoples opinions and as much advice as possible ,glad your better see you thurs x
Re: MY ELDEST Grandson is 12 and suffers from DMDHi supernan,
For information on spinal correction surgery please see our factsheets entitled ‘Spinal Surgeries’ and Surgical correction of scoliosis’. Both are available to download from our website here:
http://www.muscular-dystrophy.org/how_we_help_you/publications/diagnosis_treatment
Our peer support network, MD Links might be able to put you in touch with other families who have gone through or are going through the same experience. For more information visit:
http://www.muscular-dystrophy.org/how_we_help_you/peer_support/md_links
Claire
Information and Support Coordinator
Freephone: 0800 652 6352
Email: info@muscular-dystrophy.orgRe: MY ELDEST Grandson is 12 and suffers from DMDhi supernan
The surgery is well worth having if its available to your grandson and as soon as possible to preserve muscle strenght, breathing as well as posture. dont let the docs forget about you.
I waited soo long for my opp that it was a relief when it came and to be honest all I remember is my mum leaving me in the pre opp room and then the drive home from hospital. but I know now as an adult how worried my mum, gran and older sister were for me. But for all the worry that came with it it was worth it in the long run, if I hadn’t had the opp my breathing would have got a lot worse instead of improving. 3 months after my 10hr opp I was able to learn to drive, I would have not been able to do this had I not had the opp.
Hope all goes well for your grandson and try not to worry.
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