New to site, My experience
 

Hi! I am new to the site, excited to have other people to talk to as it often feels lonely. I was diagnosed shortly after birth with Hydrocephalus and then had a VP shunt placed a few weeks after birth. I was a little slow to learn to walk but ended up developing just fine with the help of physical therapy and ballet. I had no problems until the age of 5 when I had an emergency revision and spent most of my kindergarten year on bedrest.

Since that scary incident, I have lived with my share of headaches. We found that the causes varied from needing braces, to glasses, to various sinus problems, in addition to Hydrocephalus. It has been 12 years since my revision and so far, no major problems... even we though we thought we ran into trouble, the scans turned up clean. Lately I have experienced lots of trouble with my neck around the tubing, it is stiff and painful.

Also, I get shunt headaches almost daily, where there's a sharp pressure either on, or to the left of my shunt. As college life is rapidly approaching, I am concerned that the shunt is not working properly and hope to figure it out before moving away. Anyone else having these troubles? it seems as there is not many resources for my age range, just kids and older adults.

Hi Lauren
 

I have experienced the same symptoms as you but at an earlier age. I had a surgeon tell my mother and father that there were outlets of shunt revisions that can be done. I experienced great pain when I was younger from the fluid buildup. It took many times for revisions to get it right.

Because of the shunt being a foreign object in the body it may be the reason for what you are going through. My parents told me and my surgeon told them that that was THE reason for it. I had to endure great pain until they finally arrived at the right one where my body accepted it. They told my parents that was the logical way and only way for me to stop the pain I was having. I had my shunt(s) put in when I was born.

If you need to talk with me about this please do so.