My mother was diagnosed as being hydrocephalic when she was 69 years old. She had all of the classic symptoms except being incontinent. She was shunted and received speech, OT, therapies. She did great for two years. This past summer my sister summer my sister and I saw her losing ground where her memory was concerned. We took her back to the neurologist on 2 occasions & had the shunt adjusted. However, we’ve been told that’s all the more that can be done where the shunt is concerned so that she doesn’t get a brain bleed. Now, unfortunately the memory loss is hitting Mom big time & nothing more can be done. So in scenarios like this, what is the life expectancy?? Or will this be like dementia & Alzheimer’s where it could be several years??
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my husband was diagnosed with adult onset non-communicating hydrocephalus 13 years ago. He had gait problems and slight memory problems but was not incontinent. In 2007 he had a shunt inserted which made very little difference. His gait became considerably worse and he had a bad fall in 2003 and was then confined to a wheelchair. He has now been bedbound for two years is doubly incontinent and with considerable memory loss. He sleeps most of the time and has some swallowing problems. he has had 2 strokes and several TIAs. He lives at home with me and has two Carers four times a day. It is a sad illness to have and his case a very slow but painless end to the life of a very lovely and once energetic man.
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Hi, I’m 44 years old and had my shunt placed into my right temprolobe to clean and keep out hydrosyfulus or water ion the brain. I was 18 when I had the first alert of the brain fluid. The second landed mein the Hospital with 2 more surgeries. I have had a total of 5 brain surgeries since 1991. This year my shunt turns 26 and my body is taking some bad scar abuse. Because my pain is overwhelmingly difficult to just handle my own daily needs.PLANET
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I was diagnoced with hydrocephalus at a early age toi and for a shunt places 6 date before my first b-day, and de placer the say acter mt second b-day. I also had it replaced afterwards, but I I don't recall how many times exactly, but I do know the last was in 1993 just a few days after my 12th b-day. I was okay for over 24 years, and just a few weeks ago I had to undergo a new surgery because a of a valve malfunction and partial blocage. I'm presently still in recovery but other then that life's a charm, to me who's been living with this condition all my life, it's really not that bad. Personnaly I prefer this by far to cancer.
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I just turned 52, and currently on my 3rd VP SHUNT. Which was implanted 7/20/2017.
I was born with Hydrocephalus AND Epilepsy. But it wasn’t discovered until I was Almost 2 years old. Got my first shunt when I was 2.
Hydrocephalus weakened my Left side
I was born with Hydrocephalus AND Epilepsy. But it wasn’t discovered until I was Almost 2 years old. Got my first shunt when I was 2.
Hydrocephalus weakened my Left side
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I know this is old, but it saddens and angers me that nsgs are the only doctors who have a clue about the progress that's been made in hydro research and treatment. I sincerely hope she went through with it and now has a happy, relatively healthy child. I'm 54 yo, dx'ed with hydro at 3 weeks old. I got a shunt a week later. I currently have a VP shunt that will be 41 yo next month. I have a college degree, marriage of almost 31 years, two grown children, and I'm a published author. Not all of us are severely disabled. It's time the medical profession woke up to that.
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We won't really know until all of us from the First Generation are gone. I'm 54, shunted at a month old.
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Are you still here? I'm 54 and was shunted at a month old. I'll be happy to answer anything I can for you. :)
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Did you go to a neurologist or neurosurgeon? There's a big difference between the two. A neurologist will be of little help. The neurosurgeon is the one to see.
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Hi Tammy
I am a first-generation patient with hydrocephalus and am now in my mid-50s, having developed it at the time I was born.
Having been a member of two Facebook groups, there are some current menbers who are in their 70s, so there's hope for me yet.
The indication is that we can live up to a healthy age.
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Hi Lizard66, welcome to the First Generation, mate. I'm same as you, shunted about 4.5m old. We're tough, hey? Kudos, mate.
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Blurry vision, balance and continence issues, maybe breathing diffs because you have a vp. I'd keep in touch with your neurosurgeon and neurologist.
Get regular scans. that's what my surgeon told me. LOL.
Get regular scans. that's what my surgeon told me. LOL.
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I hope she carried the child too. Doctors are too quick to judge and think that killing the child is the 'right' thing to do.
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I am the eldest of 3. My next brother Steven was born by hydrocephalus and passed away 9 months old. My younger brother Neal was then born with the same condition. He was fitted with a shunt as a baby by a brilliant Doctor Shepherd and although my father was told that Neal would not live past his teenage years at best, Neal is still going strong (he does have physical disabilities but is mentally very sharp) and in August 2023 he will be 55 years old and he currently lives alone and is capable of looking after himself. To anyone with a child with this condition there is hope that your child can live a full long life.
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I'm sixty. That is is a lot of VP shunt replacements. I started at 7. At 16 had three. Then I went 43 years until I had had my next, three, doctors could not believe I lasted that long without an operation. I still have pain, and the doctors could not remove the old shunt because it was covered by 43 years of scaring, and to get to would mean cutting, I would probably bleed out. Now I have two shunts and a headache all the time.
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