Hydrocephalus Support Group

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  • 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...
  • 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...
  • amber9690

    Hydrocephalus pain

    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...
  • Hi guys! My 5 month old daughter is getting ready to have surgery this month for her condition. This condition is new to me and I am a nervous wreck with her. I'm afraid to let anyone hold her. If I do, I'm always right there with my hand near her head. If her head flops a little I take her back immediately. Am I being too much? I think anything with the head is serious. I watch her through the...
  • ckosel

    Hydro without shunt?

    I was wondering if any one here has hydro that did not require a shunt? Our adopted daughter from Bulgaria was born with internal hydro of a slight degree not requiring shunt but exhibits many hydro symptoms. Wondering if we should have it checked out (nothing new has come up, she has been this way for four years since we brought her home) just wondering if damage is permeant.
  • amyferris

    Bike helmets

    Hi, I'm looking for some advice about bike helmets. My daughter (21 months corrected) was born at 28 weeks. She had bilateral grade 3 bleed on the brain and developed post-haemmoragic hydrocephalus. She had a shunt fitted 1 months after her due date. She's doing fantastically well. As a family we would like to go out on the bikes, with Eliza in a seat. We are having real difficulty finding a...
  • Hello everyone, my name is Bryan and almost 15 years ago my wife and I hear the worst thing ever. We were at our first ultrasound for our first baby and the doctor looked, looked again, left, 3 more doctors did the same and then he returned. He said in 20+ years he has never seen this...Long story short, Skyler was diagnosed with congential in untero hydrocephelus. We were told we told an...
  • My son has a genetic form of congenital hydrocephalus along with a migration issue. He's a happy, pleasant 9 month old and we have him in every type of necessary therapy and we're fortunate to see a wonderful team of doctors. Although his condition is genetic, its a spontaneous mutation meaning he just has terrible luck and there is no trace of this in our family history. Even though I know...
  • Has anyone been treated by a Chiropractor when they have been diagnosed with hydrocephalus? I am looking into seeing a Chiropractor but am unsure if it is safe for me to do so. I have a VP shunt. I do not have a neurologist that I can follow up with about this. Just curious...
  • mattuk123

    Hi all

    Hi everyone I am new to the group. I suffer from Spina Bifida Hydrocephalus I just wanted to introduce myself to the group. :-)
  • I had a ct scan recently and it was of no help.would an xray show the hydrocephalus tubing in my abdomin? if not what scan would?
  • liamw100

    Please support my cause

    HiI am taking part in a 10km mud run in October for a charity called Neurocare.It is a 10km obstacle course in the mud!WHY??!!I am doing this to raise as much money as possible to help the hospital with their current projects!They have helped me with my condition which is hydrocephalus and i want to give some thing back!please help and donate!https://www.justgiving.com/liam-ward3thank you!also...
  • Has anyone here with hydrocephalus gotten a hair transplant or has discussed this with their doctor? I am curious as to who has gotten them and if they can get them. the next time i see my doctor is in a little over a year and would like to know before then for curiosity.
  • liamw100

    Please support my cause

    HiMy name is Liam and I have had hydrocephalus since birth. I have a shunt fitted and all is well. I have been treated at Sheffield hospital and their Neurocare department.I am doing a 10km mud run in october to raise money for them and their projects!Please help me and Donate! https://www.justgiving.com/liam-ward3Every little helps!thanksPlease help me raise money for a great Hospital!I am...