Hi everyone, my names Kristina and I have hydrocephalus aka water on the brain. I have had since the day I was born. I get headaches everyday but hey im a youth pastor and I have kids to watch and take care of that I love. I love my job, it has its ups and downs but doesn't most jobs have that. I know Jesus loves me and that I am in his hands. I am wondering if there was anyone out there that has hydrocephalus? I have a few questions for you guys. 1. how do you deal with them? 2.Is there anything to make they get easier?
My son (now 28) was a preemie who had a major bleed into his ventricles while in NICU; he has a VP shunt for hydrocephalus.
While, thankfully, he never had a any major problems...headaches are common.
We are not sure if it is calcifications causing them along the tubing, or the tubing running over muscles and causing spasms, but warm packs on his neck seem to help when he gets them.
Stress can cause and increase in frequency too.
You will be in my prayers for your pain relief and upcoming move
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My son (now 28) was a preemie who had a major bleed into his ventricles while in NICU; he has a VP shunt for hydrocephalus.
While, thankfully, he never had a any major problems...headaches are common.
We are not sure if it is calcifications causing them along the tubing, or the tubing running over muscles and causing spasms, but warm packs on his neck seem to help when he gets them.
Stress can cause and increase in frequency too.
You will be in my prayers for your pain relief and upcoming move
Oh my sweet sister, I havent met many people that have what we have. I have a VP shunt as well. I have over 3 or 4 dozen surgeries. I have a few questions. 1.) Have many surgeries has he had? 2.)Does he get many headaches?
Well I am praying for your son. Love ya sweety, Youth Pastor Kristina
He has had only 2 revisions, and the last time was when he was a child.
They said the tubing would last a lifetime.
We realize the Lord has spared him of surgeries and complications; he was saved from death at 2 days old when they wsnted us to pull the plug.
He has infrequent headaches now, thankfully!
Over the years he has slipped away from the neurologists; who knows if the shunt is even connected still?!
I have encouraged him to get checked out again some time!
I feel for you as I get headaches almost daily due to arthritis and allergies
Do you have cerebral palsy too?
He has a very mild form....not the usual case scenario; another miracle considering he should be a vegetable or dead!
It has only affected his lower extremities (spasticity) but yet he drives, is married, and is a talented drummer!
PTL
Praying for you
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Last edited by servantofMercifulLove; 14th May 2009 at 09:55 PM.
Hydrocephalus 
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