Hydrocephalus Support Group

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  • Tatchic

    Diagnosed @ 12, now 26 with severe abdominal pain

    Hi all,I am brand new to all of this. I was diagnosed when I was about 12 years old I am now 26. My first surgery was my vp shunt placement. A while later they found I have a brain tumor. Second surgery was in 2005 to remove but was unsuccessful.I followed up with 2 months of radiation. Tumor has been stable for the most part. My reason for this post is unexplained right abdominal pain. On and...
  • Tenai


    I was surfing the net on flying with a shunt and came across one thread that stated there could be problems travelling to warmer countries.  Does anyone know if this is true???  I want to go to Puerto Vallarta, Mexico, again in Jan 2018.Joann
  • Tenai

    shunted 3 weeks ago

    Hi everyone.  I'm a 57 yr old female that was just shunted due to hydrocephalus.  I had (still have a little piece left) a brain tumour, (an acoustic neuroma) that needed to be debulked and from that I developed CFS.   My neurosurgeon installed (for lack of a better word) a Codeman Kakim.   I meet with my neuro next week for all the info.  At this point, only info I have, is that off the...
  • My son developed hydrocephalus as a baby as a result of being born prematurely and having severe brain bleeds. He had a reservoir placed when he was 3 weeks old and then his first VP shunt around his due date (when he should have been born). He had his first revision 2 weeks later when the shunt became clogged. After that we had 5 years with no shunt problems until last year in March 2016 he had...
  • GLintheOC

    VP Shunt placed 3/16/17- has moved

    Hello all. I'm a 47 year old woman who was dx with severe hydrocephalus due to a tectal glioma blocking my CF exit.  I had an ETV done in 2016 but it wasn't working as well as we needed it to, so I had a VP shunt placed on 03/16/17.  It's been uncomfortable- tight, pulling,my actual ear hurts (not inside, the ear itself). I am also fighting extreme fatigue.  It doesn't matter how much I...
  • Hello, I'm a 23 year old woman, I had a VP shunt put in after a colloid cyst removal that caused hydrocephalus, in January of this year. I have been experiencing so much bloating, headaches and abdominal pain. Just wondering if this is common for people with VP shunts? Thankyou in advance, Amy 
  • aims

    VP shunt tube trouble

    Hi,I was fitted with a vp shunt 3 weeks ago and am recovering at home. However my tube keeps moving around by my neck, has anyone else's tube moved around a lot ? It's pretty scary and is quite painful.  Other than that I seem to just be a bit sore everywhere but I guess that will calm down soon I hope ??? Thank you x
  • AS1977

    How long do shunts really last?

    Let me start off by saying I feel great! I am pain free and completely recovered from my last bought with hydro. My most recent shunt revision was in March 2011. My problem is that the statistics regarding shunt problems and hydrocephalus are bothering me. I have heard several times that 50% of shunts fail within two years (of course I believe most of them fail within weeks of implantation), and...
  • fithedreamer

    VA Shunt in babies?

    Hi there,My 7 month old baby old has recently been diagnosed with Hydrocephalus and hence VA shunt will be needed.Can anyone share me your expereinces on having a VA shunt?I was told that this shunt is not a one off event as many kids will need a revision of shunt due to: 1. shunt malfunction 2. The kid will eventually outgrown the tube when they get older. It sounds very scary to me as my baby...
  • realgirl

    Any others diagnosed ~ age 10? Connect with others

    Hi everyone,After 5 years of looking everywhere for other similar stories I've decided to make my own post. As it is my lovely daughter's 15th birthday coming this week, I feel I really owe it to her to make some new effort to find anyone she might be able to relate to. I will call her Skylar. After a fairly long period of unfortunately attributing her symptoms of intermittent nausea, headaches,...
  • smerikalynn

    Something wrong with my shunt?

    Hi! My name is Erika, I am 25 years old and just had a shunt placed in November. I was feeling okay up until about 3 weeks ago. I started noticing some increased pressure in my head and having dizzy/nausea spells. I had called my neurosurgeon and they told me it was most likely due to my congestion (I had just gotten over a nasty flu). Well a week ago I hit a wall. Complete exhaustion and I...
  • Dyzneybrat

    hydrocephlaus... concerned..

    Hello, new to the group.. just wanted to say hello  and i have had a shunt for 5 years now. im 47 and had 2 surgeries from one malfunction of the shunt.. i have extreme anxiety.. always thinking something is wrong.. constantly calling my neuro surgen.. it seems like he doesnt care and doesnt wanna see me... i get frustrated on why i dont feel good.. my head feels heavy.. ears ringing.. vision...
  • puffy1976

    Just diagnosed...

    Hello, my name is Suzanne. I am a 40 year old lady who just happened to be getting a MRI of my head due to a MS excerbation. Along with the lesions they saw evidence of hydrocephalus. I was in the hospital for 3 days but they didn't do anything for the hydrocephalus.  They just gave me high dose steroids for my MS. I am getting these HORRIBLE headaches and I am getting worried after reading...
  • Jeremy

    I think something is wrong with my VP shun

    Hi. I'm new here and this is my first post. I have a VP Shunt that I've had for a year. I always have pretty bad headaches and am on pain meds for them. For about the last. 3 weeks my headache has been worse and the meds that usually work pretty well have only taken the edge off. I have also been very tired and have had a few times when I felt nauseous but it only lasted for a while and then went...
  • CanadianChick

    Hyrdo & VP Shunt Since Birth - Never Replaced

    Hi, I've had hydro since birth (over 25 years) and I've never had anything done to it; no malfunctions, no infections, no surguries, nothing whatsoever.I'm kind of paranoid about that, cause I've not found anyone else in this situation and I feel like I'm just waiting for something to be wrong with it as if it's inevitable.Is there anyone else in this situation who's had one shunt as long as I...