I am 17 years old and have Hydrocephalus as well as several other conditions including asthma, agenesis (2 lobes of my right lung) and macular scaring secondary to toxoplasmosis. Last year two years ago I had a shunt malfunction and the ventricular catheter of the shunt was replaced and then this passed July the rest of the shunt was replaced when the valve became detached which was found after I was symptomatic for a year. Now it is long after the July surgery and I am feeling sick again but not necessarily with shunt malfunction symptoms. Tiredness, lack of appetite, nausea, stiff neck (pain when moved, and pain in extremities, and recurring illness, and sometimes as head ache to name a few. CT's and MRI look fine, blood work for everything conceivable came back normal. My parents as well as my doctors and I don't know where else to look. Do you have any ideas? I have never had a shunt infection before and I don't have a fever but I have also NEVER had textbook symptoms with any of my problems and I have not had a shunt top to rule this out. Is that a possibility? I am just so tired of being sick I have spend my entire high school career in and out of the hospital and I would like a break. Thank you for any ideas you might have.
I would have other systemic disorders such as chronic infections, and inflammatory conditions evaluated. Based on your symptoms it is not clear that you have an acute shunt infection, but you may have a chronic infection. Therefore, having a shunt tap may be reasonable to exclude this possibility. If you have further questions I would refer you for a second opinion to Dr Luciano in our department of Neurosurgery. He is an expert on shunts. Good luck.
Sorry, but this might be helpful. I also for got to mention that it has been determined that I have EXTREAMLY minor Chiari I. Also ever since the position of the shunt was changed several years ago I have had a sort of dent or hole in that area sometimes it hurts kind of like a burning sensation and when I touch it it makes a crunching noise but apparently I am the only one who can hear it.
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