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shelteredpoet 06-06-2005 09:20 PM

Still feeling lost
I attent the support group for adult hydrocephalus in Toronto, ON, and it's great, but there are many times where I don't know if I belong.* In a way, I feel a bit inadequate because I don't know much about the condition, and am severely hesitant when it comes to researching.* The other members speak of ventricles, MPH, and all that other interesting medical lingo, and all I feel myself doing is staring into space because of my severe short attention span.* Every now and then, my attention kicks in again, but I'm so embarrassed that I often don't say a word when the group asks me to join in.*

I've had hydroceph since I was 6mnths old (I'm 23 now).**However,*I've just sat back and just lived with it for so long, and not doing much in advocating for the condition to have more exposure and consideration, as well as respect, but I feel so trapped inside myself to not do anything that part of me wonders why I seek moral support when I don't act on it.* I haven't had any problems lately with my hydrocephalus, and maybe that's why I feel that I have nothing to say.* Alas, no matter how far I get to helping myself, I always think I can ignore what I have, but the reality is, I can't.

Lisa Harper 06-10-2005 06:10 PM

Still feeling lost
Hi there:

I have just recently been involved with starting a support group in our area - Huron County.** I*am 36 and have Spina Bifida.* Our group has been fantastic for all of those involved - I encourage you to speak your mind and ask lots of questions - I have lived my life as if I have no disability and have felt out of place at such gatherings too.* But the things I have learned have been so valuable to me - and the friends I have made will last a lifetime!

Be proud of who you are and what you have - you may be an inspiration for someone day who is feeling just the same as you are.* You are very well spoken and sound like you have a lot to contribute!

Good luck and best wishes,

Lisa Harper




KellyNIN 06-23-2005 07:58 AM

Still feeling lost
Hello, this my first time in one of these support groups.So, please bear with me. I am 31 and I have hydrocephalus since birth. I have had as far as I know two shunt revised unsure about if I had one when I was a newborn. So, maybe three all together.But I'm writing to you because about A year and a half ago I started experiencing my headaches again but along with that, came the feeling that I am numb, tingling, especially in the hands and feet, almost like I'm alot of pressure above the eyes and the base of the neck, when these things happen, i just want to die,my hearing goes in and out and I'm afraid to move because I don't want to fall say it's not sinus And this occurs about 5-10 after I eat.I have been to the neurologists,neurosurgeons and they can't figure it out. All they say is either, we can replace your shunt or here have some pills. MRI and CT don't really show anything wrong. I don't know what to do. Just gettin frustrated and feel alone.Anyone else experience this?

Katzi 07-07-2005 05:35 AM

Still feeling lost
Hello Kelly & everyone,

************ I'm new to the group myself.*I'm 36 & have had hydrocephalus since birth. I've had 6 shunt operations (my last one being in April of*1983 shortly before my 14th birthday)

*************** Kelly...the tingling sounds familiar to me. But this is only because I started suffering from*the tingling sensation*shortly before my last operation.This plus whirling colors& dizziness. After I was operated on for the shunt failure in '83,my neurologist said that they were seizures.

************ Maybe your doctor can run an EEG* (brainwave) test on you to see if you are having seizures.

***************************** Best of luck,

***************************************** Kathy/Katzi

KellyNIN 07-09-2005 10:25 PM

Still feeling lost
Hi Katzi-** Thank you for the advice. I will check into that. By the way-Welcome to the club!!! I am fairly new to this as well. I check on this website when i can. Hope to keep in touch-

Have a great day! If you need to talk. I'm here.

********************************************* * Take CAre- Kelly

Trisha 08-04-2005 01:21 AM

Still feeling lost
HI my name is Trisha and I had twins, that were*14 weeks premature*on November 27/04. Both my*son and daughter*had an IVH (Intraventricular Hemorage). My son's was quite severe and*resulted in him having *Hydrocephalus. He had a shunt put in when he was big enough and then things started to get better. It then got infected and he had to have it taken out. The second shunt was put back*in at the end of March and (knock on wood) it has been working ever since. I am looking for parents who are in a similar situation and/or someone who has hydrocephalus for a similar reason. Just want to know what to look for and what I can do starting now to make my sons life a little easier.

Thanks a lot!<BR>*

SHARLUK 08-06-2005 12:05 PM

Still feeling lost


leepylee40 10-03-2005 10:15 AM

Still feeling lost
Hi sheltered poet, I too have just lived with hydrocephelous not really thinking about it much until<br> recently... I have been working in a work shop for interlecually disabled cut I felt I didn't fit in I am quite intelegent so I felt out of place.I have just done a skills test and I was suprised to learn that I wasn't what<br> I thought I was,hence I do not accept what the test says<br> Though it did say I am quite intelligent and articulate<br> but it then said I wasn't as smart as I think I now I have doubts about myself. I want to deal with this but its difficult....take care and look at the varios things on this site,...they have helped me.

SweetP 10-21-2005 12:04 AM

Still feeling lost
My son was born prematurely and suffered from an IVH bleed, which led to hydrocephalus.* He recently had his shunt revised due to a valve failure.* He is very bright, but he does have some fine motor skill problems, and I suspect that he may be hyperactive.* I'm not o sure what kind of academic environment to place him in.**I would love to hear from other parents or children who have been through this.


SweetP 10-21-2005 12:05 AM

Still feeling lost
And also, does anyone know of any hydrocephalus support groups in northern New Jersey or Manhattan, New York?

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