Originally Posted by Kwoznick
Wow! I have had Hydrocephalus and a V.P. Shunt since 3 Months old! I am 21 now and very blessed to have only had one revision! I am sorry to hear some of you are having a Hard time adjusting to the Shunt! Honestly it has always effected me! I can't be out in the sun (or heat) like most people I end up getting real bad head aches and end up getting sick! I to battle head aches not quite as servere. I have head aches daily though which I control with Tyenol. It seems now though as I get older things bother me more. My neck hurts frequently and I have back problems which it seems to me most people with Shunts battle to. I am actually wondering now I am sensitive on that side of my head and can no longer sleep on my side. Does anyone have days where it hurts kinda just sore as if it was slept on! I have been having this pain 2 days now and I tend to freak out when I get things or pain that i've never before had. It seems now as I get older I have extreme tiredness all the time I've been battling two years now. Well regarding everything else I am thankful to have found a site where I can speak with other People with shunts and see if my issues are similar. I will certainly keep my ears open regarding these servere head aches. From what i understand it has something to do with the pressure. The shunt may be pumping to much or not enough. I have had these but not that bad since my shunt failed 12 years ago. My nuero surgeon has gone out of his way to explain the shunt and how it works and I hope my experiences can help you guys in Some way. Thank you for Listening and you are all in my Prayers
I was diagnosed with hydro at 6 weeks, My story is kind of like your Katrina, I too have not had many surgeries. I had 2 at birth, One at 4 (my shunt failed) and at 12 I was going to get a tube lengthening but they just put a new shunt in. Now I have also experienced some of the same symptoms as you, I get small headaches, not really worth disrupting my day, but they are there. Lately it seems like I've been really tired. Considering that I am a college senior I don't know if its from just not sleeping enough or if it could be related to hydro. Now you said you have been feeling the same thing, has your neurosurgeon said that this is due to hydro, or could it be something else. Lately it seems that a lot of this has been coming on for the past few weeks, but I will say that its getting better. As for the shunt pain? Yes you may feel tenderness if you lay directly on your shunt, a nurse who specializes in hydro patients said its surface pain and does not mean that something is directly wrong with your shunt. The heat itself does not affect me much, I do feel slight pressure, but when I think about it, I've always been in the sun I guess I never though about how it would affect me, although it never really did. I do get the neck and back pain, this could be due to the tube that sort of runs down the back of your neck sometimes it doesn't move as much but when it does move it tends to bother other nerves in the area, I just recently had the neck and back pain, I just use a heating pad and it has gotten significantly better.
I haven't been to a neurosurgeon in years, which kind of scares me alittle, since all of this has just come up, although I do have an appointment in Aug. I guess it kind of freaks me out cause something could be wrong and I wouldn't know. However I haven't had any symptoms of a shunt malfunction. Although my shunt is pretty old some may say (going on 13 years), I guess I'm sort of scared of surgery nor do I have the time for it.