son, 14 months, has tethered spinal cord

[Guest guest]

Hi, my son, , had an MRI done on Wednesday due to him not bearing

any weight on his legs anymore, and found that he has a tethered

spinal cord. His neurosurgeo won't give me any more information over

the phone, wants me to come in, unforn. his neurosurgeon is about an

hour away so we have to make an appt, instead of just going in to

talk. I just want some more info on it, I have done some research

online, but I want to hear from actual people that have been thru it

or know about it. He use to bear weight on his legs, but a couple

months ago he stopped, his left leg seems to be worse, he has stopped

growing, and also has trouble with his left arm. I don't know if any

of those has anything to do with it or not. He also has Dandy

Variant, hydrocephalus, and possible seizures. Any info on the

tethered spine would be great...thanks so much.

[Guest guest]

I do wish you the best of luck. That sounds like a very frustrating

situation, to say the least.

While I don't know anything about this, I did find this article, with

some resourses where you might find someone with more answers. From

what I can tell from this article, you are lucky to have been able to

get diagnosed this young. You probably have a tough road ahead,

at least for a while, but if the doc was this aware, I expect that

means he is also good at treating the problem.

Best,

Shulamit

The article is from the National Institute of Health.

What is Tethered Spinal Cord Syndrome?

Tethered spinal cord syndrome is a neurological disorder caused by an

abnormal stretching of the spinal cord. The course of the disorder is

progressive. In children, symptoms may include lesions, hairy

patches, dimples, or fatty tumors on the lower back; foot and spinal

deformities; weakness in the legs; low back pain; scoliosis; and

incontinence. Tethered spinal cord syndrome may go undiagnosed until

adulthood, when symptoms such as sensory and motor problems and loss

of bowel and bladder control emerge. This delayed presentation of

symptoms is related to the degree of strain placed on the spinal cord

over time. Tethered spinal cord syndrome appears to be the result of

improper development of the neural tube, and is closely linked with

spina bifida.

Is there any treatment?

In children, early surgery is recommended to prevent further

neurological deterioration. If surgery is not advisable, spinal cord

nerve roots may be cut to relieve pain. Other treatment is

symptomatic and supportive.

What is the prognosis?

With treatment, patients with tethered spinal cord syndrome have a

normal life expectancy. However, some neurological and motor

impairments may not be fully correctable.

What research is being done?

The NINDS conducts and supports research on disorders of the spinal

cord. The goals of this research are to find ways to prevent, treat,

and cure these disorders.

Organizations

National Organization for Rare Disorders (NORD)

P.O. Box 8923

(100 Route 37)

New Fairfield, CT 06812-8923

orphan@...

http://www.rarediseases.org/

Tel: 203-746-6518 800-999-NORD (6673)

Fax: 203-746-6481

Spina Bifida Association of America

4590 MacArthur Blvd. NW

Suite 250

Washington, DC 20007-4266

sbaa@...

http://www.sbaa.org/

Tel: 202-944-3285 800-621-3141

Fax: 202-944-3295

This fact sheet is in the public domain. You may copy it.Provided by:

The National Institute of Neurological Disorders and Stroke

National Institutes of Health

Bethesda, MD 20892

--- klbhye <khristracy3@...> wrote:

> Hi, my son, , had an MRI done on Wednesday due to him not

> bearing

> any weight on his legs anymore, and found that he has a tethered

> spinal cord. His neurosurgeo won't give me any more information

> over

> the phone, wants me to come in, unforn. his neurosurgeon is about

> an

> hour away so we have to make an appt, instead of just going in to

> talk. I just want some more info on it, I have done some research

> online, but I want to hear from actual people that have been thru

> it

> or know about it. He use to bear weight on his legs, but a couple

> months ago he stopped, his left leg seems to be worse, he has

> stopped

> growing, and also has trouble with his left arm. I don't know if

> any

> of those has anything to do with it or not. He also has Dandy

>

> Variant, hydrocephalus, and possible seizures. Any info on the

> tethered spine would be great...thanks so much.

>

>

>

>

>

>

>

>

[Guest guest]

Hi Tracey,

How fortunate that has a a Mom who is observant, caring and

diligent- coupled with a doc who cares! I never heard of this stuff

you are faced with. Know I care and you and are in my prayers.

Please try to become a partner with your docs. It may be a long,

frustrating road ahead. You need to be strong, watchful,

persistant, and energetic to face this challenge. The emotional

roller-coaster will be a big challenge. I am always awed when i see

a MOM in action. There is nothing like her in all creation.

GBY

>

> Hi, my son, , had an MRI done on Wednesday due to him not

bearing

> any weight on his legs anymore, and found that he has a tethered

> spinal cord.