Quick Update:
Mylee had her follow-up with Dr. R (Neurosurgeon) today, he says her spine looked great, no syrinx! Thank you GOD! Syringomelia is commonly known to be associated with Chiari Malformation and since Mylee had some issues with her CSF flow prior to her brain decompression, she will continuely be checked for this.
What is syringomyelia? (sear-IN-go-my-ELL-ya)
Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control.
However, we were also checking for Tethered Cord. It was noted in the results from the MRI that she has a small fatty tissue in her lower lumbar region of her spine. Dr. R mentioned something about a dimple or tail portion of her spine. He also said this wouldn't be something we needed to be concerned about at this time. Once Mylee is old enough to be potty trained and we start to see some incontinence issues or if she starts to complain about lower back pain for us to contact his office and an MRI of that specific region will be ordered. For now, we will continue to pray and hope that she will not be diagnosed with this. We will also follow up with Dr. R and our Neuro family for a yearly MRI to view Mylee's Chiari. Below is some information regarding Tethered Cord.
What is Tethered Cord Syndrome?
The spinal cord extends from the base of the brain through the boney spine to the lower back. Soon after conception, special cells come together to form a tube that will become your baby's spinal cord. If this tube does not completely close, the spinal cord can become tethered. The cord is said to be "tethered" when it is abnormally attached within the boney spine.
There are two ways the spinal cord can become tethered.
If your child was born with spina bifida (open spine) then the cord could become tethered because of the scar tissue that resulted from surgically closing the spine at birth. This scar tissue causes the cord to attach abnormally.
The spinal cord can also become tethered with spina bifida occulta. This can occur without visible outward signs although usually half the children have visible symptoms.
In both cases, the tube that forms the spine failed to completely close during pregnancy.This may not be a problem until the child develops symptoms. Normally the spinal cord is able to move freely when your child bends or stretches but when it is tethered, it is stretched, especially with those movements. This abnormal stretching puts tension on the cord that can cause permanent damage to the muscles and nerves that control the legs, feet, bowel and bladder. Early detection and treatment is important to prevent this from occurring.
Signs and symptoms:
Your child may have one or more of the following signs or symptoms:
Skin on the lower part of his/her back:
Fatty mass
Hairy patch or discoloration
Skin tags
Dimples
Bowel or bladder problems:
Changes in bowel control
Incomplete emptying of the bladder
Frequent urinary tract infections
Changes in bladder pressure as seen on special testing (called urodynamics)
Difficulty in toilet training younger children
Diaper may always be wet between diaper changes
Orthopedic problems:
Persistent back pain
Increasing curvature of the spine (scoliosis)
Loss of sensation in the legs or feet
Unequal changes in size of the legs or feet
Stumbling or walking changes
Weakness in legs or feet
Please continue to keep Mylee in your thoughts and prayers.....xoxox
No comments:
Post a Comment