As some of you may know little Lincoln needed to go in for a shunt MRI- a 5 minute MRI that would tell us how much fluid, if any, is building up in his head. She suspected it to be benign fluid in the forehead area.
We got the results late last night and I’ve just been trying to process them.
There is no extra fluid in his head!
That’s great news.
but they did find some other concerning findings.
I always hear stories of how people go to the doctor for one thing and they end up finding something else, well this is one of them.
Lincolns MRI showed the following-
1.Large Arachnoid Cyst
An arachnoid cyst usually develops in the head, but may also develop around the spinal cord. It is named an arachnoid cyst because it occurs in the space between the brain (or spinal column) and the arachnoid membrane. This is one of three membrane layers surrounding the brain and spine. If in the head, the cyst will grow between the brain and skull or in pockets around the brain called ventricles. The cyst is usually filled with cerebrospinal fluid (CSF). CSF is a naturally-occurring protective fluid that surrounds the brain and spinal column. The fluid accumulates in the cyst as the walls of the cyst do not permit drainage into the CSF system.
Primary arachnoid cysts, the congenital version, are usually caused by an abnormal growth of the brain and spinal column while the baby is developing in utero. This can be genetic. However, the exact cause of these growths is not known.
About two-thirds of the arachnoid cysts we find in the head are located in the upper part of the brain. The other third are in the cerebellum located in the lower part of the brain. (lincolns is located in the Cerebellum)
Most people with arachnoid cysts do not have symptoms. But an arachnoid cyst can cause problems that produce symptoms. If the cyst is getting bigger over time or if bleeding occurs into the cyst, your child may have symptoms. For example, if an arachnoid cyst continues to get bigger, it can put pressure on the surrounding parts of your child’s brain. It may block the circulation of cerebrospinal fluid. Blocked cerebrospinal fluid leads to a condition called hydrocephalus, which also increases pressure inside the skull.
An arachnoid cyst sometimes will cause no symptoms. If this is the case, the doctor may just watch the cyst to make sure it doesn’t change size.
If a cyst is causing problems like headaches, nausea, vomiting, changes in activity or trouble with vision and balance, your child may need a procedure to remove the cyst.
Lincoln will have an MRI every 6 months to check size of the cyst, or until he is old enough to verbalize his symptoms to us, he will be our biggest tool in telling us if the cyst is causing problems. Obviously with this age, we really don’t know if it is symptomatic and that is why we are doing the MRI every 6 months to check size of the cyst.
2. He has a Chiari Malformation #1.
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.
Individuals with CM may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some individuals, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Persons with a Type I CM may not have symptoms. Adolescents and adults who have CM but no symptoms initially may, later in life, develop signs of the disorder. Infants may have symptoms from any type of CM and may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight.
As of right now Lincoln isn’t showing any symptoms, something else we will just have to keep an eye on and wait for him to verbalize his symptoms.
3. His Fluid space is enlarged.
All that means is he has large ventricles in his brain. Some people have larger than others. The good thing is he doesn’t have any extra fluid filling up those large spaces.
So our next step is to do a Full MRI of the brain and spine- That will tell us more detail of the cyst and also if there is any extra spinal fluid in his spine. He has to go under for this, last time he went under for a procedure he did great.
His appointment is on Tues the 9th, children’s hospital is working so quickly with us to get this done before we leave. The will be putting all the images on a disk for us to take to Seattle and they have referred us to a great Neurosurgeon.
I just want to say Thank you to my dear friend Kelsey who eased my heart and soul with this information. It was a lot of info at once and if anyone knows how to feel about it, its her. Thank you, I’m going to miss you.
Thank you Emily Williamson for reminding me of these verses.
Proverbs 3:5-6 5 Trust in the Lord with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight.
Matthew 6:34 34 “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.
Love you all!!