I am 32 years old who was born 2/1/2 months premature with cerebral palsy,lazy eye, and hydrocephalus. After 6 shunt revisions I have chronic headaches. It is more of a pressure headache around the shunt which is on the right side of the head. I use a ice pack coverd in a towel and lay it on my head for about 15 minutes to half hour to get rid of the headache. Accupressure,cranial sacral therapy also helps with the headaches. Before going to a cranial sacral therapist I had gone to my neurologist who couldn't figure out the reason for the pressure in my head. The Dr. had done a CAT-SCAN and the shunt had no abnormalities. He then told me that he wanted to do surgery and put in a calibrated shunt to control the drainage to prevent headaches. At the time I didn't want to go through any more surgeries so I opted out. I then went to a cranial sacral therapist and the chronic headaches were gone immediately. If I sleep on my right side of my head I have throbbing heaches that I releive with an ice pack daily.

Dear Sisinchrist,
I wanted to message you because I too have dandy walker syndrome and hydrocephalus. I am nineteen and I have been suffering with shunt failure and intermitten shunt malfunction all my life. I also have an old tube coiled in my stomach from when I was five or so. I believe that I am currently going through a malfunction as I am having major headaches, I am sleeping a lot and my neck is aching on the side of my shunt. Unfortunately I haven't found anything that really helps the pain and every time I go into the doctor's they send me home, I guess I need to catch it at the exact right time. If your daughter would like to talk to anyone I would be more then happy to let her know that there is still a life to be lived through the pain and surgeries!!

I've had a VP shunt my whole life here's my story: I've had it operated on twice... I'm 28... I was born 3 months early and had the shunt put in at birth... I had my first revision when I was in grade 7- my symptoms before the doctor thought it could even be my shunt were flu like symptoms until it got to the point I couldn't stand.Because we thought it was the flu (there were some days were I'd be feeling great and able to go to school no problem) and then others were I was in bed for a week. I think all they did was replace the valve part... then in I believe grade 9-I had a whole new shunt put in... and I thank my mom for noticing the blockage (she was washing my hair after dying it) and asked if I was feeling okay... and I said yes because it hadn't gotten to the point where I was sick.

I haven't had any other problems since just the occasional headache where it hurts up by the valve... but it goes away on its own... is this normal? (no dizziness or any of the other symptoms I had when I was sick the first time).

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

Katrina

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.

My name is vivyan * I am 12 years old I just got my first shunt replacement it was very scary I will admit it but I got threw I was having headaches really bad like your so I went and got my shunt replaced I was the first one to get the kind of shunt I have it was made my DR scalar and I have onley had it replaced once and that was not to long ago if u still have those head aches please go and get your shunt replaced I haven't had any headaches since I did u wil feal relly releved afterwards well hope this helped I really do

Hi, and welcome to NT! This is a great place with many friendly, caring, and helpful people.

We're so glad you found us!

Hi Katrina, I've had hydrocephalus since I was 2 months old and am now 26. I've had about 4 revisions in my life. The last was last week. I had been having similar symptoms that you are describing. After a head ct and shunt flow study they determined my shunt was still working, but not to its full capacity. He explained that the vp shunt I had in was at a fixed pressure. He replaced mine with one of the new programmable shunts where they can change the pressure in the dr's office. So far so good! I got in next week to get stitches out and hopefully he will release me back to work. Have you been to your dr since you've been having these symptoms? You might want to get checked out if the pain persists. Take care!

I'm glad I'm not the only one experiencing some of these symptoms. My story is a lot like yours. I am 16, have had a shunt since shortly after birth and only one revision. I haven't seen the neurosurgeon for quite awhile but I've been experiencing these pinching and/or throbbing headaches near the shunt. I've been debating if they're severe enough to be worth the fuss of an office visit.. But if this is as bad as my symptoms get, that'd be fine by me!

hi all

I have a CSF leak from head trauma, there is a condition called Orthostatic Headache, this can be caused by leaking or over draining from a shunt if your shunt is programmable your doctors maybe able to adjust the settings some meds also effect CSF production

there are many variables within the CSF system that shunts do not take into account exertion and posture are but two

due to the plight of a friend on another site, I have designed a more advanced shunt and sent it to

http://www.cerebrospinalfluidresearc...content/5/1/10 in the uk if you know any doctors doing research in this field, please PM me and I will froward the design to them , its free

best wishes