5 year old daughter - born with congential hydrocephalus - aqueductal stenosis, agenesis of the corpus callosum. Programable shunt placed at 2 days old. Revised at 3 months old due to a shift in the fluid to the subdural space caused by cyst. CT scan shows severe midline shift. Despite this, she is age approprite in most areas with some delays in fine, gross motor skills.
June 23, developed shunt infection, shunt externalized for 2 weeks. They had a difficult time controllng her ICP. Very sensitive to small changes (best level was at -3). Symptoms were sleepieness, vomiting, drops in heart rate, and seizure. New shunt was placed, home in 3 days, four days later, back in the hospital with vomiting, sleepieness. CT scans her normal, shunt tap ok. After a few days of more vomiting, sleepieness, drops in heart rate, and a couple more seizures, an external drain was put in to measure her ICP, showed spikes, especially while sleeping. 3 shunt revisions, one found a kink in catheter near neck, second showed proteinaceous debris in shunt resivoir, catheter in the head. Third showed more debris so a non-programmable, low pressure VA shunt was placed. Still in the hospital. Partly because she has lost so much weight. Things with shunt are better however, still having headache and vomiting. Some days are fine and some days are not. Now pumping shunt 30 times every three hours. Discovered via MRI a chiari malformation. Doc said not putting pressure on her brain.
1. Why same type of shunt she had for 5 years now not work?
2. Why can she go for 36 hours without vomitting and then wake up vomiting every 1/2 hour?
3. If pumping helps, is this something that can resolve itself? If she needs lower pressure, what other options are there?
4. Doc says next step is craniotomy which he is trying to avoid. It is hard for me to travel with my daughter somewhere to get a second opinion. Can doctor's give advice based on history, CT scans, MRIs?
Your daughter will be so fine don’t worry at all.
Your daughter is really such strong that she could persist all these events.
I would rather not like to be at the place of her surgeon, but finally a solution should be find out. Steps are now much advanced with the neurosurgeon in charge. In this case, it is advisable to get the same programmable valve and the same old pressure should be used.
After application of same old pressure it will take few weeks to get clinically normal. A major issue here should be avoided: do not loose time to find the adequate physiological fluid pressure, because we do not have enough formulas to find the appropriate pressure in Chiari patients.
Hope my advice was helpful
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