Routine Neurosurgery follow up and MRI

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. 




   




   

Hydrocephalus Association Conference

The Hydrocephalus Association hosts a national conference every other year and this year it happened to be in Minneapolis.  I spent the last couple of days attending several conference sessions and it was so interesting to get updates on the research they are doing- a few interesting things I learned I figured this was the best place to jot down my notes:

- research being done around the presence of Lysophospholipids (LPH) in post hemorrhagic hydrocephalus and the TGF-β inhibitor- basically found if they inject the drug Decorin in rats reduces instance of hydrocephalus- study here: http://www.ncbi.nlm.nih.gov/pubmed/23983032

- listened to Neuropsychologist speaking about common issues they see in hydrocephalus patients and therapies.  This was very interesting to me and some of the areas they tend to see delays in specifically around spatial visualization (doing puzzles, etc), processing & response times when you put them on the spot with a question for example.  They also mentioned hydrocephalus children tend to have delays with memory & concept formation, language discourse (understanding sarcasm), math and reading comprehension (abstract questions about what they are reading).  Sensitivity issues was also mentioned (Load noises and tastes) which we definitely see in Morgan.  This is all helpful information to share with physical and occupational therapists so they know where to focus their therapies and recommends a neuropsych exam with all hydrocephalus children around the age of 5. 

- interesting to watch ETV with CPC procedure and listen to a neurosurgeon thoroughly explain the risks and when they would or would not consider these procedures as an alternative to shunting.  Risks included factors of individual brain anatomy- close to pituitary gland, proximity to basilar artery- 15% chance of ST memory loss, hypothalamus issue 11%.  The success of this procedure is mostly found in ETVs of older patients without prior shunts or infants but not with post hemorrhagic (brain bleed) hydro- rate of success they are seeing in the US is 30%, in Africa was 47% but they do not have alternative therapies there.

Of course was also beneficial and most interesting to meet other hydrocephalus patients & families and network.  We enjoyed a family dinner & talent show on Sat night with Morgan & her brother!  Will definitely be checking out where the HA conference is headed in 2 years!