Hydrocephalus Support Group

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  • 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?

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    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...
  • Coryw1116

    Vp shunt revision

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    Hello. I am 27 years old. I have had a vp shunt for three years and had it revised 2 days ago. The distal portion separated from the catheter portion and fell into my abdominal are near my bladder. The dr placed an entire new system but left the old tubing i n my abdomen waded up laying near my bladder. I need to know if this is normal and if anyone else has had the surgeon leave old tubing...
  • aims

    VP shunt tube trouble

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    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
  • GLintheOC

    VP Shunt placed 3/16/17- has moved

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    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...
  • sammarie

    New diagnosis

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    Hello I am new to the group. My son was just diagnosed with hydrocephalous through an ultrasound. We are going for a second ulrasound and neurologist appointment tomorrow. But I was wondering is there ever an instance where a shunt isn't needed for treatment? My son is now 5 months old and hasn't had any symptoms except Macrocephaly. I am just nervous for his future with surgeries. 
  • amber9690

    Hydrocephalus pain

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    Wanting to know how everyone with hydrocephalus manages their pain. What pain do you have on a daily basis? I was diagnosed in 2011 with hydrocephalus when I was 23. Tried the ETV, when that failed had a VP shunt put in. I've had over 21 surgeries trying the VPL shunt (infections)...no shunt (REALLY bad idea) and now back to VP shunt. Seems like even though my hydro is managed as well as it can...
  • amyphee

    VP shunt bloating, headaches and abdominal pain

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    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 
  • Dsuiter

    Newly diagnosed

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    Hi , I am 41 and was just recently diagnosed this past Feb after lumbar puncture. I started having problems almost two yrs ago when i started having clear fluid draining out the tube in my ears. I had two encephalocele and temporal defect repairs within 4months of each other. Then this past April I had a VP shunt placed and going in a couple weeks to have it adjusted. Having like slight headaches...
  • Tatchic

    Diagnosed @ 12, now 26 with severe abdominal pain

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    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

    question??

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    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

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    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...
  • realgirl

    Any others diagnosed ~ age 10? Connect with others

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    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?

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    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...