Tethered cord question for the doctor - please help

[KelliD]

I posted this a few days ago and didn't get a response, but would like to try again.

My daughter was diagnosed with Chiari Malformation (due to balance issues) in November of 2007 by a radiologist and confirmed by a pediatric neurologist. In January we saw a neurosurgeon who disputed the diagnosis (we weren't wanting surgery for that anyway - just a diagnosis). Then we had an MRI of the lower spine done due to issues with incontinence, leg pain and weakness. That MRI came back showing the conus to be abnormally low (lowest part of L3) and suspicious for tethered cord (no fatty filum). She has urodynamic testing scheduled for the end of April, but the neurosurgeon has already said it will have to show substantial abnormalities before he would consider surgery on her.

She has had incontinence issues since she was 4 (she potty trained easily by the age of 2 1/2). She is now 8 and has almost daily bowel and bladder accidents. Along with that and her leg pain, weakness and the MRI findings, wouldn't that be significant enough for the doctor to think surgery would be warranted? Could she have permanent continence issues if we don't act quicky? Her continence issues seem to come in spurts as well - could they be connected to her growth spurts (pulling on her spinal cord as she grows)? If so, would the urodynamics show inaccurate results if she in not going through a growth spurt at the time of testing? Or will the urodynamic testing give us solid black and white answers instead of more grey? I have asked these questions of our own doctors, but they seem to be afraid to commit to possibly doing surgery and hedge all the questions.

Also, should we assume she does have Chiari because two professionals told us or do we go with the neurosurgeon's assessment? We are confused on whether she actually has these conditions or not.

Thanks, Kelli.

[KelliD]

Bumping up. . .

[Abhijeet Deshmukh, MD]

Hi.

Chiari malformation has some clear definitions. There will be cerebellar tonsilar herniation or descent. This is expected to worsen. Even if this is tethered cord, surgical release is essential. If you have read it on the internet, most of the children with tethered cord benefit from the release surgery and less than 2% can have any new problems after the surgery. But if surgery is not done, there may be permanent damage to the nerves affected. She may have a permanent loss of continence.

There should not be any confusion about Chiari malformation diagnosis. The MRI shows it quite clearly.

Regards

[KelliD]

Thanks for the response.

I think the confusion over the Chiari Malformation diagnosis is the length of the herniation. The radiologist and neurogist both felt it was Chiari (but never gave us an amount of herniation) but the neurosurgeon didn't think it was "enough" of a herniation to be defined as Chiari. He said it was about 3 mm.

Also, can the low lying conus and the symptoms be enough to diagnose the tethered cord? The neurosurgeon says since there is no fatty filum present he isn't convinced of a tethered cord. That's why we are doing the urodynamics, but I'm still unsure based on what I've read that that will be definitive enough either. We are so confused because we go from the neurologist who told us about the tethered cord and that we should have surgery to the neurosurgeon who is much more conservative and really hesitates to confirm a diagnosis. Should we be getting a second opinion?

Thanks again.

[Abhijeet Deshmukh, MD]

Hello.

As far as the Neurosurgeon is considered, you can have a second opinion, since the explanation is not satisfactory.

The filum may not be fatty. The important clinical indicators are exacerbation of symptoms on bending forwards or doing activities which make the cord slide up and down in the spinal column.

As far as Chiari Malformation is concerned, the descent of 3 mm can be present in normal people. A descent of more than 5 mm is usually considered significant. But te hernation may increase further. The tethered cord has to be released.

Regards

[KelliD]

Do you feel April 28 is too long to wait to get the urodynamic testing done? I tried to move the appointment up, but that was the soonest we could do it.

Also, do you feel the urodynamic will definitively show the tethered cord or is it possible to have borderline results? Is it possible for the results to be skewed if her incontinence is related to her growth spurts (and tension on the spinal cord) and she isn't going through a growth spurt at the time.

When you say her symptoms would be exacerbated by bending forward, what symptoms would we look for? Her symptoms related to tethered cord are leg weakness, leg cramps and the incontinence - none of which would be obvious during bending forward.

Thanks!

[KelliD]

I just wanted to add something to my comment I just posted a minute ago (see above). I just asked my daughter to touch her toes without bending her knees. She can't do it (comes about 5 inches from touching her feet) and I asked where it pulls when she stops (it pulls for me in the back of my legs which I think would be the norm). For her it pulls exactly across the base of her spine where the tethered cord would be. Is this significant?

[KelliD]

bumping up

[Abhijeet Deshmukh, MD]

Hello.

You did a good test for the tethered cord. It is very much a significant finding.

I do not think the urodynamic studies are for diagnosing tethered cord. I feel you need not do the studies. They are usually done to diagnose intrinsic neuronal problem of the bladder.

Regards

[KelliD]

We just received the results of an MRI we had done last week. The first MRI that showed her conus to terminate at the lower part of L3 was just of the lumbar spine. The latest MRI was done of the whole spine and says there appears to be a sacralized vertebrae resulting in the conus to be higher than first thought. Here is the MRI report:

Assuming a normal number of vertebral bodies, L5 appears sacralized placing the
conus medullaris at a normal level of mid L2. No evidence of Chiari
malformation or tethered cord.

Further up in the report it states that the conus end in the inferior part of L2 - not middle as the impressions state.

According to the neurosurgeon this mostly rules out a tethered cord now and verifies his first thought that there is no Chiari. Of course we are still dealing with all the symptoms that pointed to tethered cord.

Is there any symptomotology associated with sacralized vertebrae? I can't seem to find much about it on-line. Could that be a cause of her incontinence issues?

He suggested we still get the urodynamics done and if it shows marked upper motor neuron degeneration then he would look at her again.

Thanks for your thoughts on the subject.

[KelliD]

bumping up

[Abhijeet Deshmukh, MD]

Hi.

Sacralized vertebrae can produce symptoms similar to those produced by nerve root compression. In fact, there is some restriction of movements. This feature is common to tethered cord also.

The urodynamic studies may show some positive results, now, especially after tethered cord and Chiari have been ruled out.

Regards

[KelliD]

Is there any treatment for sacralized vertebrae?

[KelliD]

bumping up

[Abhijeet Deshmukh, MD]

Hi.

The sacralized vertebra does not require treatment. You will have to limit some of the activities. Avoid extreme bending, jerky movements, etc.

There is no risk of any further complications from sacralization.

Regards

[KelliD]

Sorry for so many questions, but if there isn't any further complication why would she need to avoid certain activity.

Also, if this is a possible cause to her incontinence then will we expect incontinence throughout her life if it can't be treated?

Thanks for all you input.

Kelli

[KelliD]

bumping up