Hi everyone,

My name is Becky and I have a 6 month old son named Trenton (along with 2 other kids). My son was 28 week old preemie and his brain began bleeding at 3 days of age when he was only 3 pounds. He has an external ventricular drain put in when he was 3 weeks old (EVD), but that was unsuccessful. NOw he has a VP shunt and we are experiencing what may be his first malfunction. I do not know ANYONE with children with shunts. I have no support from people who know about this, nor do I know any adults with one. I basically need friends who understand what we as a family are dealing with. I am in a constant state of fear for my son, always checking his soft spot etc. Currently he has some swelling and we will be seeing the neuro. in 2 days.....which seems absolutely a horrible amount of time to wait. Thanks for your support already and for welcoming me here. I hope to meet many of you!

-BECKY LYNN

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Hello Beckylynn and WELCOME to Neurotalk!

I see you have found your way to our Hydrocephalus Forum...

If you need any assistance or have any questions please don't hesitate to ask... Someone will always be along shortly to help in any way that we can.

Please feel free to roam around and join in anywhere!!
I look forward to seeing you around the board.

Abbie

Hi Becky,

My daughter is turning a year this week and is actually going in for a vp shunt on her birthday. My daughter was two months premature and developed hydrocephalus after birth. I was hoping to learn more about your experience with your daughter. **
Thanks, Amanda

Hi Becky,

My name is Kate and I just turned 30. I have had a VP shunt since I was 3 months old, due to being a preemie and having a brain bleed that caused hydrocephalus. I have had about 6 revisions, the last one being when I was 12. I also have a vision condition called nystagmus that was caused by the brain bleed I had, which causes my eyes to twitch involuntarily.

I have never had any restrictions on activities, but if you play sports, you obviously need to be careful and aware of what is going on around you to avoid injury. I am able to drive a car, and have a job, I love upside down roller coasters, swimming, and all sorts of other things.

I remember when something would go wrong with my shunt, I would get a bad headache. I also had one infection that I remember, which was actually the last time I had my shunt revised 18 years ago. The infection manifested as abdominal pain, since it was draining down the tube. I never had a headache with it.

I currently experience what I call "fuzzy headedness" when there is a major weather change. I get normal stress and sinus headaches like most people, so if I get an unusually bad one, I know something may be up with my shunt.

More than likely, your son will outgrow a few shunts, since they make different sizes for growing children. The shunt will need to be revised when the tubing gets too short as he grows. I have had an adult size shunt since age 12, and thankfully have not had any problems since then. You will go through some revisions and tough times, but your son will be able to lead a normal life.

Take Care,

Kate

[B][/B hi i am a 26 year old female I have had a vp shunt eversince I was born and with that I also get the headachs tightness aroundthe shunt hell even sometimes I will wake up and cant move my neck.At the being of this year I went to the hosptial and they said I should of come back when Iwa 15 years old to get it extended. but it the pass 25 years I feel that it werid that I have always had problems with school my math is very crappy and was wondering if anyone else ever had these problems? i have only work 3 jobs in my life time and other jobs I have tried they said that I was slow or stupid and it can be abit frustrating.I was going to try and apply for adult disability and was wondering if any one else has tried it.I am glad that u and other people can beable to work but what about the ones that cant also I never learned how to cut my own steak with a knife till I was 15 years old.also sometime this year Iwas goingto have tohe surgey done and I hope that helps my learning skills I have heard of people having problems with math and I cant hardly remember what I did or said like a week ago hell even tow days ago.and its getting to the point where its driving me crazy the head-aches I have or rediculious I feel that like im stupid and i dont catch on like other pople as far as doing normal activitys I can drive but as far as sports and other stuff never can catch on to anything but simple crap.please if anyone that as the same issues with there shunt or has tried to get disability for the issues with there shunt plaease respond back.