Hydrocephalus since born. Looking to share my story.
 

Good morning everyone,

My name is Jason and I am 32 years old. I was born with Hydrocephalus. I have been lucky that I've had very little problems when it came to this. Rather then a more egg shaped head and I am near sighted, I am okay in every other way.

Here is my little summary:

- Shunt was replaced 3 years later after being born from it collapsing into my bran. Since then, I have had the second one in for 29 years.
- 2000 My neurologist told me that the shunt was blocked and the only way they were going to do anything if it puts me into life threatening conditions.
- 2009 Found out that my 1 and 3 ventricle are bigger then the other one.
- 2013 I was having pressure around my shunt that lasted for a few days. I was hospitalized and was told I was going to be going to surgery in 4 days. Within the first 2 days it got changed to the next Wednesday. The Specialist came back with the same decision in 2000 that they weren't going to do anything if I was in life threatening condition. The pressure went away. I went and see them again as a precaution and they did a shunt study(injecting blue dye into the shunt and getting realtime pictures). They had found that the tube that runs from my brain to my stomach has a crack in it, someway the fluid is getting around. Again, they were leaving it as is because I am not in any pain, danger and it could put my life at risk if they operate to remove it and put a new one in.
- 2014 I was in a minor car accident and I went to see the same Specialist above. They got me in for an x-ray and found that nothing was wrong. I was okay and not injured.

Hi Jason,

Seems like you cope admirably with all that life throws at you. While there is reason most first Posts are somewhat negative - people come here at their lowest, most confused and pain-filled times - it is pleasant to read of a young man doing well for himself, despite issues.

I am glad you came out unscathed from your MVA.

Hope you enjoy being here.

Dave.

I am posting here because I wanted to know some of the experiences of people who are older who have Hydrocephalus? I have never met anyone in person who has had it. I was just wondering.

I guess we aren't able to edit our own posts once they have been posted.

The specialist had told me that people by the time they are 30 that they have had their shunt changed at least twice. I was wondering, has the materials made to make a shunt changed in the last 30 years? My valve is always opened and the Doctors don't have a reason to how the fluid is getting around, it just is tell they me. I am lucky because there are people that got it worse then I do. As life goes on I've become less self conscience when it comes to my horseshoe scar where my shunt is and the other scars I have on my stomach. Apparently women dig scars, who knew!

Reading stories from other members here is surprising that Hydrocephalus comes for people later in life. I thought that it was just something we were born with.

I'm glad to be here and found something like this to where there are others like me.

I take it, then,you have found the Hydrocephalus Forum. For others:

http://neurotalk.psychcentral.com/forum14.html

It, as with all our Forums, is a mine of information. Make sure you check out the Stickies at the top of the Pages.

When you have made a few more Posts you will be able to Edit what you have already Posted. Other functions, Posting Links, Private Messaging, also come online as you hit a certain number of Posts. These are restricted initially to discourage Spammers.

Frankly, the more you put into our Community, an exponentially greater amount you get out. Have a look around, there is caring, knowledge and fun here.

Dave.