Congenital Scol - Clues to Spinal Cord Issues?

[Guest guest]

Hi everyone,

As I have read that congenital scoliosis can also carry a risk of spinal cord anomolies, I am wondering if anyone who is affected by this can tell me if there are any tell tale signs?

Our pediatrician tested Holly's reflexes and 'assured' us that her hemivertebra was an isolated case. I have since read that physical examiniation does not give you all the information you need. We are waiting until our pediatrician re-opens to get a booking for an MRI, so it is a very nervous wait.

Our daughter is 16 months old with a hemi vertebrae at L3. She is a walking talking dynamo and we sincerely hope that she does not have any additional issues.

Thanks in advance,

Emma

[Guest guest]

Hi Emma,

I have read some information about there being some signs such as a tuft of hair

on the back, a sacral dimple, assymetry between the two sides of the body,

toileting issues, and I believe that spinal curvature can be a symptom. They

would use an MRI to make sure that the spinal cord does not have fluid in it

(syrinx) or is not tethered. Usually they check for a Chiari malformation as

well. I would expect the curve to be measured as more when she is standing up

due to the effects of gravity. However, since she has only been walking for a

few months, her muscles may strengthen more and help. I had once read that the

standing x ray should be after age two, because of this, but it is a somewhat

controversial subject. Maybe if all else is well, but the curve progresses, she

could have the hemivertectomy. They will monitor her curve with xrays and

monitor he to make sure she is not developing a compensatory curve, which can

get to be a problem itself, or if the two curves are small, they can balance

each other out. Here is a link to a site that explains some spinal issues

http://www.tofs.org.uk/index.php/what_is_tof_oa/about_vacterl/vacterl_-_vertebra\

l_anomalies.

>

> Hi everyone,

>  

> As I have read that congenital scoliosis can also carry a risk of spinal cord

anomolies, I am wondering if anyone who is affected by this can tell me if there

are any tell tale signs? 

>  

> Our pediatrician tested Holly's reflexes and 'assured' us that her

hemivertebra was an isolated case.   I have since read that physical

examiniation does not give you all the information you need.  We are waiting

until our pediatrician re-opens to get a booking for an MRI, so it is a very

nervous wait.

>  

> Our daughter is 16 months old with a hemi vertebrae at L3.  She is a walking

talking dynamo and we sincerely hope that she does not have any additional

issues.

>  

> Thanks in advance,

> Emma

>

[Guest guest]

Emma, your girl does not show any symptoms. My son's spinal cord showed like an

oval in the MRI. It was already flattened by the vertebral bodies. He had

kyphosis which is more likely to cause paralysis than scoliosis. It got up to

100 degrees at some point. The membrane was not damaged and he never lost

control of his extremities, bladder, or sphincter. It is something to keep your

eyes on but most likely, from what you say, she will be OK. In any case, it

happens gradually and a minimal function loss is reversible in most cases. We

heard this from two spine neurosurgeons when we had to decide whether it was

time for surgery or not. -Laimi

Re: Congenital Scol - Clues to Spinal Cord

Issues?

Hi Emma,

I have read some information about there being some signs such as a tuft of hair

on the back, a sacral dimple, assymetry between the two sides of the body,

toileting issues, and I believe that spinal curvature can be a symptom. They

would use an MRI to make sure that the spinal cord does not have fluid in it

(syrinx) or is not tethered. Usually they check for a Chiari malformation as

well. I would expect the curve to be measured as more when she is standing up

due to the effects of gravity. However, since she has only been walking for a

few months, her muscles may strengthen more and help. I had once read that the

standing x ray should be after age two, because of this, but it is a somewhat

controversial subject. Maybe if all else is well, but the curve progresses, she

could have the hemivertectomy. They will monitor her curve with xrays and

monitor he to make sure she is not developing a compensatory curve, which can

get to be a problem itself, or if the two curves are small, they can balance

each other out. Here is a link to a site that explains some spinal issues

http://www.tofs.org.uk/index.php/what_is_tof_oa/about_vacterl/vacterl_-_vertebra\

l_anomalies.

>

> Hi everyone,

>  

> As I have read that congenital scoliosis can also carry a risk of spinal cord

anomolies, I am wondering if anyone who is affected by this can tell me if there

are any tell tale signs? 

>  

> Our pediatrician tested Holly's reflexes and 'assured' us that her

hemivertebra was an isolated case.   I have since read that physical

examiniation does not give you all the information you need.  We are waiting

until our pediatrician re-opens to get a booking for an MRI, so it is a very

nervous wait.

>  

> Our daughter is 16 months old with a hemi vertebrae at L3.  She is a walking

talking dynamo and we sincerely hope that she does not have any additional

issues.

>  

> Thanks in advance,

> Emma

>

------------------------------------