Mighty Meghan's Journey

Friday, November 15, 2013

Day of Thanks #15: Today I am thankful for a good check up with Meghan's neurosurgeon!! Meghan did excellent today (even though she isn't feeling the best).

Today, Meghan had her 6 month neuro check up. This was basically just a developmental check. There was no imaging done today. He would like to have Meghan come back in 3 months for a rapid brain MRI with no sedation to check the size of her ventricles. The last 2 MRI's, Meghan has had smaller ventricles. While it's good to have ventricles smaller in size and not enlarged ventricles, it isn't the best scenario to have too small of ventricles. When the ventricles get too small, usually due to too much fluid drainage over time, they become like slits (aka slit ventricle syndrome). If her ventricles are small after the next MRI, he will probably slow down the drainage rate on her shunt, which would enable her ventricles to grow in size slightly. Again, we don't want the ventricles to get too large, so we will go back 3 months later for a sedated brain and spine MRI. He will look at the syrinxes on her spine, Chiari and ventricle size at that time. We will also arrange to have the skin biopsy done at this time as well. There is no reason to have a shunt series anytime soon (x-rays of shunt system from brain to stomach) as she doesn't show signs of shunt failure or malfunction and she has hardly grown so he doesn't need to look at the tubing in her stomach. Otherwise, he was happy to see that Meghan is doing great. It was pretty cool watching Meghan interact with him. Meg's weight today was 20.7 pounds (fully clothed) and 30 inches...no change. Meghan has taken her turn at the cold that is going around and she even decided to share it with mom :)

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

This blog has been created to keep friends and family updated on the medical journeys we embark upon with Meghan. We will share updates on doctor appointments, therapy sessions, how Meghan's life is affected and how life as a family is affected. Please Note: The medical information on this blog are from our experiences and should not be substituted for diagnosis, treatment or medical guidance. Always seek medical advice from your doctor.

When Meghan was 9 months old, she was diagnosed with Hydrocephalus (secondary to Aqueductal stenosis) and Chiari Malformation - both are incurable brain conditions.

At 13 months, Meghan was diagnosed with Syringomyelia throughout her spinal cord.At 22 months, Meghan was diagnosed with Hemihypertrophy of the entire right side of her body with a secondary limb length difference involving her legs, and Grade 2 Hydronephrosis of her right kidney.

Other diagnoses Meghan has are: failure to thrive, macrocephaly, global developmental delays, apraxia of speech, hypotonia, syndactyly, degenerative disk disease, growth hormone deficiency.

Hydrocephalus - Cerebral spinal fluid (CSF) surrounds and protects the brain and spinal cord. Hydrocephalus occurs when there is an abnormal accumulation of CSF within the ventricles of the brain. As CSF builds up, it causes the ventricles to enlarge and can increase pressure within the brain. There is no known way to prevent or cure hydrocephalus. Hydrocephalus is treated surgically by the insertion of a shunt. A shunt is a flexible tube that diverts the flow of CSF from the head into another region (most commonly the abdominal area) of the body where it can be absorbed. Shunts commonly include valves to regulate CSF flow based on pressure and/or body position. If left untreated, hydrocephalus is usually fatal.

Chiari Malformation (CM) - A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the bottom of the skull toward the spinal cord, putting pressure on the brain, skull and spine.

Syringomyelia (SM) - A chronic disorder involving the spinal cord. The condition occurs when cerebral spinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

Hemihypertrophy - A condition in which one side of the body, or a part of one side, is larger in size than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis. For those that have a secondary limb length difference, there are two main surgical options, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally.

Hydronephrosis - aka water in the kidney - is swelling (dilation) of the urine-collecting structures of one or both kidneys due to obstruction of urine flow from the kidney. This can impair kidney function. If left untreated, this condition will progress to kidney failure.