Re: Feet/leg issues/ loss of bladder control/ birthmark on lower back/sacral dimpling

June 4, 2006

Hello,

My daughter, Keira, has a sacral dimple. It is located midline right

in the gluteal crease.Apparently they are more suspicious when they

are higher on the back, above the actual crease or they are not

centered on the back. Our doctor said the same thing: that 99% of

the time they mean nothing. Our son also has the same thing as do

the children of several of my friends and none have turned out to

have any issues because of it.

My doctor will issue an MRI of her spine and sacrum when Keira is

over 12 months old just to be sure there isn't any tethering going

on. I think that it much better to be cautious.

In the unlikely event that there is tethering, it is correctly

relatively easily and will not cause problems unless it goes

undetected and starts to pull on the spinal cord as the child grows.

I think that I would rather have an MRI performed and know for sure.

Halley

>

> For people with a club foot 99% of the time it is just a club

foot. If your child is in the 1% there can be various things going

on.

>

> Our daughter has one club foot but also has a large area on her

lower back with blood vessels that are more prominent. They said it

is a clear hemangioma birthmark. She also has Sacral dimpling. I

did not know what that was but basically is a small dimple on their

upper bottom...not a typical dimple but more like an extra crack

(sorry for the description but important).

>

> 90% of the time the dimpling does not mean anything other

than....check it out. Both of my sister's children have the

dimpling...it was checked out and everything is fine. If you child

has the dimpling, and or scoliosis, loss of bladder control, etc.

you should ask your Ped. to have a referral to a Ped. Neurosurgeon.

There is a chance it is a tethered cord...basically pulling your

spinal cord down.

>

> This is a very rare thing but a club foot is common with it.

Like I said 99% of the time a club foot is just a club foot. If

your child does have a tethered cord it needs to be treated as is

starts causing damage up the body and they loose sensation.

>

> Holly

>

> __________________________________________________

>

June 5, 2006

Many of the parents on her have children with this dimple. Kelsey has one as

well. Her first ortho did an ultrasound on her back when she was about 2

months old and determined that there was no issue with it. If it can be done

with ultrasound on Keira as an infant, it might be better than an MRI as the

MRI usually requires anesthesia in the younger ones because they must remain

still for the procedure. You might want to ask the doctor about this.

Jenni

schneeballe wrote: Hello,

My daughter, Keira, has a sacral dimple. It is located midline right

in the gluteal crease.Apparently they are more suspicious when they

are higher on the back, above the actual crease or they are not

centered on the back. Our doctor said the same thing: that 99% of

the time they mean nothing. Our son also has the same thing as do

the children of several of my friends and none have turned out to

have any issues because of it.

My doctor will issue an MRI of her spine and sacrum when Keira is

over 12 months old just to be sure there isn't any tethering going

on. I think that it much better to be cautious.

In the unlikely event that there is tethering, it is correctly

relatively easily and will not cause problems unless it goes

undetected and starts to pull on the spinal cord as the child grows.

I think that I would rather have an MRI performed and know for sure.

Halley

>

> For people with a club foot 99% of the time it is just a club

foot. If your child is in the 1% there can be various things going

on.

>

> Our daughter has one club foot but also has a large area on her

lower back with blood vessels that are more prominent. They said it

is a clear hemangioma birthmark. She also has Sacral dimpling. I

did not know what that was but basically is a small dimple on their

upper bottom...not a typical dimple but more like an extra crack

(sorry for the description but important).

>

> 90% of the time the dimpling does not mean anything other

than....check it out. Both of my sister's children have the

dimpling...it was checked out and everything is fine. If you child

has the dimpling, and or scoliosis, loss of bladder control, etc.

you should ask your Ped. to have a referral to a Ped. Neurosurgeon.

There is a chance it is a tethered cord...basically pulling your

spinal cord down.

>

> This is a very rare thing but a club foot is common with it.

Like I said 99% of the time a club foot is just a club foot. If

your child does have a tethered cord it needs to be treated as is

starts causing damage up the body and they loose sensation.

>

> Holly

>

> __________________________________________________

>

June 5, 2006

Hi, Holly,

I have a seven year old daughter with left clubfoot and a sacral dimple. She

had an ultrasound at four months to rule out tethering, and it looked fine. I

believe if they'd seen reason to warrant an MRI, she would have had one. Also,

if she'd started showing other sign of sbo, she would have probably had an MRI.

I also have a son with clubfoot, but he has spina bifida (myelomeningocele),

rather than spina bifida occulta. His lesion was at Lumbar 4, and he doesn't

have sensation from the ankles down. He also has a neurogenic bowel and

bladder.

I've had some concerns for my oldest now that my youngest was born. I often

wonder if she's developed tethered cord, etc, because my world was rocked a bit

when we received the sb diagnosis so I feel a bit paranoid now and then. She's

had leg and foot pain recently, but I've found it difficult to determine if it

is due to growing pains, needing attention, or wondering if it is otherwise

related. I know with sbo , though, there is usually a loss of sensation in legs

and often bowel/bladder problems start if tethering occurs. I have a dear

friend I grew up with whose son is two year older than mine. His sbo/tethering

wasn't diagnosed until he was over a year old. He had a detethering surgery,

but he doesn't/didn't have clubfeet, though he does have some orthopedic issues.

Anyway, just wanted to say hi!

Joy

H wrote:

Jenni,

Regarding the ultrasound-for some reason the recommended test to rule out

tethered cord on all the tethered cord websites is an MRI. I am not sure if

that can see more than the ultrasound. Our daughter had to be sedated for the

MRI so I definitely would have preferred the ultrasound. We are so fortunate

that our daughter was diagnosed can can be treated.

Her condition is very rare and I am sure that most of the members on this

group whose children have a club foot and sacral dimpling are fine....always

better to be on the safe side just to check things out though. Our daughter has

lost some sensation on her foot and it is slowly effecting other areas. She

will have surgery in a few weeks that will hopefully get back some sensation.

They said without the surgery the tethered cord will keep following up her legs

until they would no longer work.

Congratulations on your daughter,

Holly

__________________________________________________

June 5, 2006

Hi Jenni,

I asked my doctor about doing an ultrasound instead and he said that

he would prefer to do an MRI as they have the highest resolution and

are the most accurate way to get a detailed view of the area. He

said that they do have to give them anaesthesia however it is very

light as they only have to sedate them enough to " sleep " as opposed

to a surgery where they need to ensure that they won't feel any pain

at all. He said that is why he likes to wait until they are over one

year old. I think that the ultrasound can give them an idea as to

whether they should investigate further however.

Our Dr seems very conscientious so I guess we'll go with the MRI

next year and that way, hopefully, I'll know for sure that

everything is fine. I think that he may do one on my son as well. He

is almost 2 and showing no problems so far. Maybe I should see if he

can do an ultrasound on him just to see if it looks fine or if they

need to investigate further (my son also has the same dimple but no

feet issues). Although I am sure it would take a couple people to

pin him down...he's not big on the idea of being restrained at the

best of times! I just keep praying that the test will show that all

is well for both of them.

How is Kelsey doing? How old is she now? Did they just tell you

that, based on the ultrasound, that everything appeared normal?

Halley

Mateya 3yrs old

Liam almost 2

Keira 6 mos (RCF-PM brace 18-20/day)

>

> >

> > For people with a club foot 99% of the time it is just a club

> foot. If your child is in the 1% there can be various things

going

> on.

> >

> > Our daughter has one club foot but also has a large area on

her

> lower back with blood vessels that are more prominent. They

said it

> is a clear hemangioma birthmark. She also has Sacral dimpling.

I

> did not know what that was but basically is a small dimple on

their

> upper bottom...not a typical dimple but more like an extra crack

> (sorry for the description but important).

> >

> > 90% of the time the dimpling does not mean anything other

> than....check it out. Both of my sister's children have the

> dimpling...it was checked out and everything is fine. If you

child

> has the dimpling, and or scoliosis, loss of bladder control,

etc.

> you should ask your Ped. to have a referral to a Ped.

Neurosurgeon.

> There is a chance it is a tethered cord...basically pulling your

> spinal cord down.

> >

> > This is a very rare thing but a club foot is common with

it.

> Like I said 99% of the time a club foot is just a club foot. If

> your child does have a tethered cord it needs to be treated as

is

> starts causing damage up the body and they loose sensation.

> >

> > Holly

> >

> > __________________________________________________

> >

June 5, 2006

Thanks for all of the information. Kelsey was born with her left clubfoot,

mild hip dysplasia, a cyst on her left kidney and the sacral dimple. When she

was about 14 days old, she had an ultrasound on her hips and her lumbar spine

to search for any possible additional abnormalities. She had mild hip

dysplasia and the lumbar spine was ruled to be fine which I believe that it is.

I am very comfortable with that diagnosis. She is 2 1/2 now and is in

excellent health with a beautifully corrected foot and no additional problems.

I only mentioned the ultrasound because in general, I have very little faith

in Doctors at this point in my life after dealing with Kelsey and I work for

two local hospitals for their medical imaging departments. We not only take

Kelsey to Cincinnati for her foot care but also for care for her kidney. One

of the reasons being that the Doctor here in Dayton insisted that at 9 months

old, she had to have an MRI of the kidneys and the specialist in Cincinnati was

able to get all of the information necessary from an MRI scan. The doctor

here also put her through nuclear medicine scans that may not have been

necessary. So, I am a little leery of all of this because I and consequently

Kelsey have been burned before.

Certainly though, if an MRI is what is necessary, then that is what is

necessary. Making so many decisions like this for these precious babies is

such an awesome responsibility. Scares me to death most of the time.

Jenni

schneeballe wrote: Hi Jenni,