Hydrocephalus

[Krissy Cakes]

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?

Blessings and much love,Kristina

 

[Atom22]

I don't know the symptoms of hydrocephalus but I hope you are doing well Kristina.

 

[Krissy Cakes]

I'm ok just stressed with the move coming up (leaving for California June 2nd) and sometimes I get headaches, Please pray for me.

 

[Atom22]

I will! Take care on your trip. =)

 

[servant of Merciful Love]

Hi Kristina

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

 

[Krissy Cakes]

Hi Kristina

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

 

[servant of Merciful Love]

Hi

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

 

[Krissy Cakes]

I'm so happy for your son. I have almost died a few times but PTL I am here today to tell my story. I dont have cerebral palsy.

Praying for you and your son

Love ya sis, Youth Pastor Kristina

 

[Krissy Cakes]

I'm so happy for your son. I have almost died a few times but PTL I am here today to tell my story.
I dont have cerebral palsy.

Praying for you and your son

Love ya sis, Youth Pastor Kristina

 

[servant of Merciful Love]

Thanks; my prayers are with you also!

The Lord has a plan for you both

 

[Krissy Cakes]

Thank you sweety

 

[JesusFreak2008]

I have hydrocephalus, and so does my friend Alex. He and I share this in common--my only surgery was a shunt when I was young, and this has never had to be replaced, and thankfully I've been spared many surgeries. I was however like the previous person stated, not spared of Cerebal Palsey. I have this in my lower limbs--and when I was a child, had to have surgery to correct my feet as they were pointed outware instead of regular--I get headaches/migraines almost daily--and stress definatly effects them.
​

 

[Krissy Cakes]

Hello and nice to meet you JesusFreak2008!
I am sorry you have Cerebal Palsey, but like you I get headaches everyday.
I will be praying for you and your friend Alex.

 

[Krissy Cakes]

Its been awhile since I posted here and thought maybe I should give an update.. Well things in California are going good, still get the headaches daily but have only been to the hospital once and didn't need surgery just something for the pain. I haven't been able to see a doctor yet. Please pray I can see a doctor and soon. I almost went to the hospital Last Wednesday but never went. Hope everyone is well.

God Bless,
Youth Pastor Kristina

 

[Krissy Cakes]

Oh and forgot to add that I will be going home for Christmas to spend time with my family and I cant wait i'm so exicted cause I miss my family soooo much!
Hope everyone has a great Thanksgiving!