Oh I agree, I do have a lot to be thankful for. I was extremely lucky that I received such good care from birth - i've had wonderful specialists who kept a close eye on me and stepped in to operate when necessary. I'm also lucky that while my particular condition is quite unusual and complex, it's not as severe as it could have been. I've always had problems with walking, but I did manage it (mostly with the help of walking aids). Other than that I had a normal happy childhood, did well at school and have worked all my adult life. I come from a close family, and drew a lot of my strength and can-do attitude from my mother. She'd just turned 20 when she had me, her first child, in the days before routine ultrasound scans so she had no idea there was anything wrong with me until I was born. But, rather than falling apart at hearing that I might not be able to walk, might not develop normally and all these other scary unknowns, she refused to believe that i'd be anything other than ok and was just so strong and focused - and still is - and I owe so much to her.
Unfortunately i'm not doing so good right now and am back in the wheelchair - my chronic back and leg pain got so bad that a year ago I was hospitalised to get the pain under better control. Walking is just too painful and my legs have weakened further. I will shortly be undergoing another surgery - a 2 stage anterior/posterior spinal fusion T10-pelvis. Once again I can't be straightened so my curves will be fused as they are. The aim of surgery is to immobilise my spine and improve my sagittal balance (i'm rather crunched up in the body) in the hope that it will improve my pain levels - there are no guarantees, but i'm giving surgery a shot because it's the last resort and a chance to get off morphine and all the other meds I have to take and will hopefully be able to go back to work.
According to statistics, mild SB Occulta is thought to affect as much as 20% of the general population, but most people with it don't have any underlying spinal cord or neurological problems and so don't even know they have it until it's incidentally spotted during an xray for something completely unrelated, as was the case with you and your son.
I just need to say something about Spina Bifida though. It's a very variable disability and no two cases are the same. Myelomeningocele (open) SB is the most severe form, but even some people with myelo manage to walk - a lot of it is dependent on what level the lesion is at. It's a common misconception that babies born with SB will have some form of mental impairment - sadly, this is what parents-to-be are often told by obstetricians (who don't specialise in neural tube disorders - that's the domainf of neurosurgeons) when the SB is picked up on scans, which obviously causes a lot of distress. In fact, the vast majority of people with SB have average or above average intelligence - SB itself has no impact on brain development. Hydrocephalus often accompanies SB myelo, which if left untreated can cause brain damage, but as long as a shunt is fitted to drain the excess CSF very early in life, the brain can develop normally. I know several people with SB myelo (as well as the other types) and all of them did well at school and university and have jobs, living their lives like everyone else. Also, a lot of emphasis is placed on not being able to walk - some people who've never had a mobility impairment tend to think that walking is the be-all and end-all, and that people who've never been able to walk must be bitter and depressed about it and feel like they've somehow missed out on life. In many cases this just isn't true, and it comes down to the simple fact that you don't miss what you never had!
Sorry for another long reply, and for drifting off topic somewhat, but I just felt I had to say a few things about SB
Unfortunately i'm not doing so good right now and am back in the wheelchair - my chronic back and leg pain got so bad that a year ago I was hospitalised to get the pain under better control. Walking is just too painful and my legs have weakened further. I will shortly be undergoing another surgery - a 2 stage anterior/posterior spinal fusion T10-pelvis. Once again I can't be straightened so my curves will be fused as they are. The aim of surgery is to immobilise my spine and improve my sagittal balance (i'm rather crunched up in the body) in the hope that it will improve my pain levels - there are no guarantees, but i'm giving surgery a shot because it's the last resort and a chance to get off morphine and all the other meds I have to take and will hopefully be able to go back to work.
According to statistics, mild SB Occulta is thought to affect as much as 20% of the general population, but most people with it don't have any underlying spinal cord or neurological problems and so don't even know they have it until it's incidentally spotted during an xray for something completely unrelated, as was the case with you and your son.
I just need to say something about Spina Bifida though. It's a very variable disability and no two cases are the same. Myelomeningocele (open) SB is the most severe form, but even some people with myelo manage to walk - a lot of it is dependent on what level the lesion is at. It's a common misconception that babies born with SB will have some form of mental impairment - sadly, this is what parents-to-be are often told by obstetricians (who don't specialise in neural tube disorders - that's the domainf of neurosurgeons) when the SB is picked up on scans, which obviously causes a lot of distress. In fact, the vast majority of people with SB have average or above average intelligence - SB itself has no impact on brain development. Hydrocephalus often accompanies SB myelo, which if left untreated can cause brain damage, but as long as a shunt is fitted to drain the excess CSF very early in life, the brain can develop normally. I know several people with SB myelo (as well as the other types) and all of them did well at school and university and have jobs, living their lives like everyone else. Also, a lot of emphasis is placed on not being able to walk - some people who've never had a mobility impairment tend to think that walking is the be-all and end-all, and that people who've never been able to walk must be bitter and depressed about it and feel like they've somehow missed out on life. In many cases this just isn't true, and it comes down to the simple fact that you don't miss what you never had!
Sorry for another long reply, and for drifting off topic somewhat, but I just felt I had to say a few things about SB
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