Current issues
 

Hello, my name is Andrew, I am 27 and was born with Hydrocephalus. I was born three months premature at 2.2 pounds. I have never really had any issues until about three years ago. In march of 2010 the tube broke in my neck so I had a surgery. I had to have one more in May due to scar tissue build up, the tube had to be moved. Shortly after that last surgery I developed a severe non-stop headache. The NS said my shunt was fine and said it was migraines. Spent about 9 months taking migraine meds. I then got a second opinion and the NS said the fluid was flowing too fast off my brain, but it was Hydro. He then put in a strata valve, but with on avail. I then went to the Cleveland Clinic, Feb 2012. They put in a codman programmable valve. Unfortunately that did not work, so then on December 20th of 2012 they put in a LP shunt. With the two shunts, I had about two months from surgery where I felt good. Then the headache came back. There has been a couple adjustments so far, but no luck yet. I am confident they will find the right setting. It is going to take time, hoping to make it through. Most days the pain is so bad I am stuck in bed all day. I am on a high dose of pain meds as well. The pain is usually between 6-8 most days. It would be nice to talk to some people who have gone through a similar situation. Thank you for listening to my story.

Welcome!! And I'm sorry your in so much pain!:( My husband just had his shunt put in Oct 2012 due to hydro at age 48. So we are kinda new to this still. He has a programmable as well. He was great for about 2 months after surgery and he too has developed severe headaches. Neurosurgeon has adjusted x 2 and is now draining as much as it can. No relief from the symptoms. They gave him fioricet but doesn't touch the pain. What do you take and does it relieve the headache any? Do you have any other symptoms?

one of the first on the planet
 

Welcome,

I was one of the first people on the planet to have a shunt implanted. In regards to your headaches, I have been reading a lot of the posts and I don't get it. I almost start to wonder if the neurosurgeons are competent. I had my shunt place in Jan '70, I had three revisions by the time I was 10, I had no issues or side effects until 2006, when I had to have it replaced. I have had 5 headaches in my life, mind you I had surgery for each headache. I have a VP shunt, non-programmable.