Finally!

Most, but not all, of my blog readers are family who have been informed of Autumn's health issues from the beginning.  Autumn was horrified that I shared her private business with "everybody" via e-mail, and rightfully so.  I still think of her as my baby girl, but she is only three short years from adulthood and deserves to dictate who knows what about her.

However, now that all of her friends know, she has given me permission to share with my friends.

Fall 2011

About a year ago, Autumn started falling down the stairs.  A lot.  She fell down them even when she was trying to go up.  She tripped very easily and even ran into things.  I was a little worried, but since she almost always laughed it off, I didn't become truly concerned until...

February

...Autumn told me that her toes were going numb.  She said her back had been hurting off and on for years, but that it was getting much worse. I made an appointment with her pediatrician who said Autumn only had scoliosis but referred us to a specialist at my urging.

March

That specialist didn't have any insight, so he referred us to another.  The second specialist thought he had the answer: a tethered spinal cord.  Two of Autumn's cousins had that very thing, and many of the symptoms matched up, so it seemed like the right answer.  He ordered some tests, including an MRI, and referred her to a urologist and a neurosurgeon.

April

Autumn had an MRI.  The urologist said he didn't see anything troublesome in the images that resulted from his tests.

May and June

We waited to see the neurosurgeon.

July

The neurosurgeon's office called us to reschedule Autumn's appointment.

August

The neurosurgeon's office called us to reschedule Autumn's appointment again.

September

We finally saw the neurosurgeon!  And she said she wasn't convinced by the MRI images.  She said it could be a tethered cord, but she wanted to rule out some other things first.  Autumn was missing some key symptoms, she said.

We had waited so long to see the neurosurgeon with the impression that the appointment was a technicality preceding the actual surgery.  So we (Autumn, her dad, and I) were devastated when the doctor sounded so skeptical and asked Autumn to try muscle relaxants and yoga for a month.  We felt like she didn't believe us.  We felt like she wasn't taking Autumn's increasingly-severe and nearly-constant pain seriously.

I dragged Autumn out of bed early every morning for a month and did yoga with her.  She tried the muscle relaxants, which helped her sleep at night and through some of her classes at school, but didn't help the pain.

October

So, at the end of the trial period we called the neurosurgeon's office back to report.  We were told that Autumn would probably get a surgery date if the trial didn't work.  But since Autumn's was not a straightforward case, we were asked to come back for another appointment.  Those appointments were a month out.

November

The pain kept getting worse.  She was missing school.  She started having twitching episodes.

Finally, the day of her return appointment!  The neurosurgeon was in a completely different mood.  Less rushed, more calm.  She looked over Autumn's paperwork, asked some questions, then looked over Autumn again.  She said Autumn likely had a tethered spinal cord in light of her symptoms (including one she had never mentioned to us before) and because of the failed trial.  Then she told us to see the surgery scheduler on the way out.  I was almost in disbelief!  Finally, some relief for Autumn!

December

In two weeks Autumn will have a quick twenty-minute operation, spend the night at the hospital, and miss a couple of days of school while she takes it easy.  Then our lives will hopefully return to normal. (Whatever "normal" is.)

About Tethered Cord

In the case of tethered spinal cord syndrome, (also referred to simply as “tethered cord”), a child's spinal cord is abnormally attached to the tissues around the spine (most commonly, at the base of spine). As a result, the spinal cord can’t move freely within the spinal canal, leading to possible nerve damage and problems with her ability to move freely.

A child with tethered spinal cord syndrome may face a number of difficulties, including:

• back pain
• leg pain
• weakness or numbness in the legs or feet
• difficulty standing or walking
• fecal and/or urinary incontinence

[from http://www.childrenshospital.org/az/Site1705/mainpageS1705P0.html]


Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column.  Attachments may occur congenitally at the base of the spinal cord (conus medullaris) or they may develop near the site of an injury to the spinal cord.  These attachments cause 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.  This type of tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida.  Tethered spinal cord syndrome may go undiagnosed until adulthood, when pain, 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 and may be exacerbated during sports or pregnancy, or may be due to narrowing of the spinal column (stenosis) with age. Tethering may also develop after spinal cord injury and scar tissue can block the flow of fluids around the spinal cord.  Fluid pressure may cause cysts to form in the spinal cord, a condition called syringomyelia.  This can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms.

[from http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm]