hi!
is there anyone on this board that has diastematomyelia or has a family member with it?
background information, i have a 5 yr old daughter that just over a year ago was diagnosed with tons of back issues, her biggest concern was her tethered cord and the diastematomyelia. the first nsg wanted to release both spots at the same time, as we were dealing with all of this We moved across the country, we saw the best pediatric nsg here and hel felt that only detethering the cord at the base would be enough. At the time i didnt nessecarily agree with that but decided to go that route. well we are 11 months post op and Emily who never in her life complained about her back hurting is now telling us it is hurting.
We have noticed a change in her gait(which was abnormal before) and she is now running stiff legged with her right leg?? not sure how to describe it. her feet and legs now are going to sleep at school when she sits in the chair for too long.all of her issues are with her left side of the body, absent ankle reflex, small thigh,smaller foot,no balance on left foot etc etc.
She has no spinous process in her entire lumbar region either. she does have some slight scolisois that at this time we are monitoring.
She is not allowed to do gymnastics but can do anything else. we know that she self limits herself and she has always been a quiet calm child.

im looking for anyone that has any imput on what retethering symptoms would be(she had none before perse) also does this sound like the diastematomyelia is affecting her?

i have a call into the msg office to get her in to see him, but honestly feel like he isnt going to do a thing about it. there is no other ped nsg close by either and this guy is the top guy in the state.

thanks
Tiffany

Hi Tiffany,

I know this is sometime after your post but I hope your still checking for replies and that I can be of some help. I'm 15 and I was diagnosed with Diastematomyelia when I was about 1 1/2 years old because I couldn't walk or stand. I also had a tetherd cord and scoliosis. I had surgery for the tetherd cord a little before my second birthday and used braces to walk until forth grade. I had surgery again when I was 5 because I developed a cist on my back. I think sometime between those two surgeries I started to have back pain that while deminished still continues. I also have feet deforminties( mostly my right foot which is small and twisted) for which I've had two surgeries. My scoliosis was laregly ignored by my doctors until I saw a new doctor in juinor high who took new x-rays of my back and found that it had progressed to the point where I would need surgery. I hope that you really keep on the doctors to keep checking on your daughters scoliosis because a mild case can turn very serious if you don't keep an eye on it. I also have verry little muscle in my right leg and very limited reflexes in my legs. I walk with a limp and lean to the right but over time that has improved. I think overall that time has improved my walking abilities. To the gait issue: my gait is rather wierd mostly because when I was little and to some extent today I have balance problems. That has also improved with time. If you would ever want to talk I would be really happy because I've never met anyone with the same problems as I have and it might help your daughter if she can talk to people who have an idea of what she's going through.

Retethering symtoms-Increased scoliosis,weakness in the lower extremities,decrease in nerological abilities. I hope by this time you've gotten some answers about this issue.