In hind sight I just had a feeling this visit wasn't going to go smoothly and remember feeling glad that we had this appointment coming up in the days leading up to it. Morgan has just seemed a little "off" - can't really explain it but isn't sleeping well, just seems a little cranky/needy lately and she woke up vomiting a few evenings ago.
We had a noon appointment for limited brain MRI and then follow up with Dr Petronio (neurosurgeon) right after. Then immediately following I scheduled an orthotic appointment across the street- A LOT for one day, what was I thinking!
Morgan does not have a love for MRIs so this was painful to watch and pin her down as usual and watch her scream and cry :(. We got through it and headed over to neuro and immediately could tell something wasn't right when Dr P's first question was "how has she been acting"? He showed me her scans (not a pretty sight) and her lateral ventricles are very small and her brain essentially collapsed in on one side - meaning there is not enough cerebral spinal fluid in her ventricles and her posterior shunt is over draining. ugh. Her 4th ventricle (Anterior shunt) looks unchanged which is good.
Her shunt settings have been moving down the last couple of visits because they were set backward about a year or so ago (posterior went from 80 to 60) and then the last visit they were unable to get the shunt to reset after her MRI so left her posterior at 50. This is clearly too low and so the decision was to increase the setting which will slow down the CSF flow - I believe the highest setting on the Codman valve she has is 200, he decided to change to set at 120 so that the pressure change wasn't too great. The other concern he has is that Morgan's shunts currently do not have an anti-siphoning device. Even though the shunt setting controls the pressure, certain positions like standing, sitting versus lying down influence the shunt function/drainage. Since Morgan is growing and standing and walking more now this is going to impact the drainage and he thinks at some point this shunt will likely need to be replaced in order to put in an anti-siphon device but of course this is not something we would do until absolutely necessary. He also spoke about a new shunt valve coming out soon which is MRI resistant so that they don't have to be reset after MRIs which would be ideal to wait for.
So...plan is to change the shunt setting to 120 and schedule another follow up in 4-6 weeks to check and ensure her ventricles are larger. The good news was that he did a thorough exam, looked at her muscle tone, etc and said she looks great and progressing well. He of course had issues trying to get her shunts set again (I pretty much expect this again), in order to make sure he got them set we had to head back down for CT scan which Morgan was not happy about and after about 20 pictures they finally got a view of the setting which looked fine. 1 hr appointment turned into 4 hrs once again :(
Some info I found helpful on HA site: anti-siphon devices incorporate a silicone membrane that closes when conditions favoring postural over drainage are present. The devices react to hydrostatic pressure across the two ends of the catheter and close the valve (by increasing the valves opening pressure) when the patient assumes a vertical posture.
My Journey with hydrocephalus and Cerebral Palsy
Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
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