Hydrocephalus Support Group

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  • zoe1231

    Vp shunt

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    hwy all I’ve had my vp shunt for 14 years everything been fine with it, couple of days ago I whacked my head hitting part of the shunt accidentally, I have had a headache on and off ever since and feel kind of crap, done my temperature and it’s fine but I feel hot, I really don’t no if it’s anything to worry about? Has anyone else ever had this 
  • 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. 
  • kcw

    Mom had shunt surgery

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    Hello I am new to this group - my mom was diagonosed in June with Hydrocephalus and had the shunt surgery the beginning of September.  She is still not her normal self.  She is in a rehab center.  My family and I are very frustracted and not sure if this is normal.  If anyone has any advice to give or similar experiences I would love to hear about them.  My mom was a very health person who...
  • I depseratly need this VP shunt I'm trying to finally get what I need to get releif and yet I still have to keep proving over and over this is what is needed. and I am so damn tired. I've been diealing this a pain nobody would imagine for every day all day for more that 12 years. now I finally have an answer, and a practical "cure" and I TILL have to prove over and over agian I ned this so y...
  • Hello, I am 26 and was diagnosed with intracranial hypertension recently. I had shunt inserted under emergency circumstances due to vision loss. I am not blind, but my vision is distorted to an extent.However, what my real problem seems to be at the moment is severe neck / shoulder pain, and I have lost full use of my right arm. Like when I try to lift my arm up all the way; I can't without...
  • sorry - typo in previous post - but I'm confused by the description
  • jeneliz

    What does hover have to do with hydrocephalus?

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    just confused with the descriptor...
  • 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...
  • swimmergirl247

    getting ready for a vP shunt

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    Hi everybody I've been dealing with some from of incrinal pearsure issue, I have had chronic headaches since atleast age 12 (likely younger) I suffered a trmadic brain injury at 14, was diagnosed with a chairi 1 malformation at decompression surgery at 2007 which seemed to only make things worse. about three years ago I was diagnoseds with Hypchechalus, which urned out to be wrong and after 11...
  • 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...
  • AS1977

    Recovery from endoscopic third ventriculostomy

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    Hello,I am wondering how long it takes for patients to recover from an endoscopic third ventriculostomy. I had one on December 30, and 20 after sugery I still have a headache. It is not as bad as it was in the days leading up to the surgery but it is still here. I am unable to read due to the pain and I have not been able to return to work.Has anyone else had an ETV? How long did it take for you...
  • Nalstrodamus

    I'm new to this site.

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    I joined this group to learn more about, and understand my illness, even though I've had hydrocephalus practically all my life.Right now, I have pain just under my rib cage (on the left), where my shunt runs. It started just after I finished eating. And it's been 3 hours since. Has anyone experienced this? What do you do to relieve this?
  • 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...
  • 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