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Old 01-17-2015, 10:58 AM #1
rianto rianto is offline
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Default Cysts and Hydrocephalus

Dear All,

I am new here and i would like to get some answers among fellow member on this forum.
Pardon if my English is not very good since i am from Asian country.

My son was born with arachnoid and porencephalic cysts that causing him hydrocephalus.
We did the 1st shunt when he was 4 months old and it was doing great until today. He is 7 years old now. During this time, he had 1 revision by the age of 2.

Last time we did the Ct Scan was in May 2014 and the scan shows everything is normal. Ventricles is stable in size (larger than normal brain but stable in size all these time). Cysts are also very small i assume since they didn't put any measurement of the cysts like before.
The doctor told me that when he was baby, all the empty area was all water but now all the empty areas are all brain. No hydrocephalus according to the scan.

My question is that, since he was having hydrocephalus because of the cysts, is it possible that he is totally cured once the cysts are gone? Logically it is, but i am not a doctor so i am not really sure about this and i would like to get some answers here to all fellow member who might have the same experience or condition.
2nd question is that, is shunt blockage occur more often during very young age or it is the same throughout your age.

Thank you
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Old 01-17-2015, 02:11 PM #2
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Welcome rianto.
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Old 01-17-2015, 03:33 PM #3
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I don't know if your son can become shunt independent but you need to know that if shunts are working well, imaging will often show stable and/or normal ventricles. Something like ~40% of shunts fail by two years, shunts average something like five years but that average is not helpful as I've heard a few people who've had shunts last decades. Blockage is most common reason for a revision but there are other things that can go wrong, just less common.
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Old 01-17-2015, 08:20 PM #4
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Last year in May, he was having episodes of severe headache and we went for series of scan. Everything looks normal.
So after couple of days, the neurologist decided to do a lumbar puncture and the reading was showing quite high pressure of 45+ i believe, and at that time they brought the pressure down.
After the LP neurosurgeon think it was a shunt failure or he might develop an IIH but he also not sure because usually people who have shunt will develop an IIH.
At that time we didn't do anything with the shunt and so far so good until now.

Paediatrician said that the headache is because of viral infection because the blood test and abdomen scan showing a hint of viral infection although is not very significant sign.

The reason i am thinking about shunt independence is that why the pressure could be so high at the time of the LP, if the shunt blocked, then logically after the LP, he would having another series of headache again.
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Old 01-18-2015, 01:11 AM #5
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45cm is crazy high pressure. is the shunt blocked or was it intermittently blocked.. Has anyone done a shuntogram or otherwise determined if the shunt is patent? Treatment for IIH is usually with a shunt, so if his shunt is not working and he is getting by without it working, that is amazing and scary should pressures go too high. My daughter's pressures are slowly going up so I've read about IIH because there is only so much to read out there about dealing with higher pressures (slit ventricles are flip side of same coin sometimes). Had to stop reading about it, vision issues freaked me out too much (get double vision, something like dizziness, and other visual effects with many headaches since last summer, even if they appear to be over draining related). Your pediatrician sounds unbelievably certain.
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Old 01-18-2015, 03:40 AM #6
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yes it is very high.

neurosurgeon also uncertain on what's going on.
either the pediatrician is correct about the virus causing the pressure to be high or IIH that causing the pressure to be high, the shunt should bring it down to normal if it is working well.

But if it is not working well then the pressure should be high again by now, unless under normal condition he doesn't need shunt anymore.
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