Looking for support
 

I have had a shunt since 10 days old and had several revisions over the years. I am 38 and the latest shunt revision was Feb 2010 which they put in a VP magnetic shunt. I have had the setting altered a few times due to too much drainage. I still suffer from headaches and poor concentration levels. I am only able to do 30-45 mins concentrating on anything. I would like to hear from others who have a shunt to share stories. I am 38 years old.

I used to have all different types of VP shunts until 2004 when coming out of a craniotomy I had a stroke & couldn't move one side of my body. Fortunately, I regained movement of everything in a day or so. Due to the risk I can no longer have shunts placed in my head. At the time I had both the VP and LP (lumbar) shunt. My VP shunt when it was working properly had me feeling great, however it blocked all the time & I would crash. Now having just the lumbar shunt, I don't have it blocking all the time, aside from a few infections it stays working good but I get bad headaches everyday.
Overdraining is some of the worst headaches I've had so I feel for you, and hope they can get your pressure set properly & get you feeling better. I remember when the programmable valves first came out and it's a blessing to so many. It replaces multiple surgeries to a procedure that takes 2 minutes to do and a couple x-rays.
They've come a very long way with the research & development of shunts. With hydrocephalus not being as popular as say cancer or other diseases, it lacks the financial support yet has still managed to improve the quality of life for patients. I wish you the best

I started out with an AV shunt, when I was 8mos.-old(Jan.'68). I don't know when I was switched to a VP shunt, but it was sometime over the course of five revisions I had by the time I was 9yrs.-old. I have not had any revisions since then. But all that surgery has had a lasting effect.

In addition to my ventricular brain aneurysm causing my hydrocephalus, the surgeries for both, caused bruxism(grinding of the teeth), depression, epilepsy and learning disabilities.

The last time I had a bad headache, was during the weekend of the 2011 Super Bowl. But the headaches were not related to hydrocephalus. I did vomit once, but both were due to exposure to fumes from the furnace, when I was trying to fix it. Prior to that, I had not had a bad headache of any sort, in more than thirty years. I have had the occasional headache from drinking a Coca-Cola, but that has been from a sudden rush of caffeine after a long time without it.

Hi Sheryll, I don't have a shunt myself but my husband does and every day is different with him, it can be a real roller coaster. We have found that doing gentle exercise each day (walking our beautiful doggies) or doing some Yoga helps with the concentration factor.

Long warm showers also seem to help him clear what he refers to as 'the fog'.

I am trying to get him onto this forum but he is embarrassed and shy; I keep telling him there is a whole network of people to help.

Blessings and love to you - stay strong. xxx