1. < Brain & Nervous System

Hydrocephalus: Anyone else?

Posted by mlzeid @mlzeid, Jun 3, 2017

Is there anything that can be done to prevent a lifetime of revisions? My 30 year old daughter has had 35 revisions and it seems she can barely get through a year without a surgery.

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johns92118 | @johns92118 | Oct 25, 2023
In reply to @maxine50 "Thirteen years ago, I was diagnosed with Hydrosephlus and wound up in surgery with a neuro..." + (show)
@maxine50

Thirteen years ago, I was diagnosed with Hydrosephlus and wound up in surgery with a neuro surgeon. He inserted a shunt in my head and now, after 13 years, it has decided to die and the hydrosephulus is back. I find it difficult to walk and very dizzy. I contacted the original surgeon's office and was told I had to get a primary doctor to set up appointment to be seen. Yikes. My orignal has retired at age 92, so got to get a new one. I'm hoping all my shunt needs is a magnet adjustment and not a whole new one. Have to travel back to see original doctor. More probems.

Jump to this post

I HOPE YOU GET WHAT YOU NEED. I DONT KNOW WHERE YOU WENT TO SEE A DOCTOR BUT I TRAVELED TO ROCHESTER,MN TO SEE THE HEAD NUEROLOGIST THERE AND THAT STARTED ME ON MY JOURNEY i had the shunt put in a yearage last august and just lately i have been having headaches and my balance is not good again. i also shuffle my feet starting in the late afternoon (it is getting earlier lately) and yes my vision is blurey . i would wish you all the best and recomment the mayo clinic. they helped me greatly.

john ps i also may need another adjustment on my shunt

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2 replies
maxine50 | @maxine50 | Oct 25, 2023
In reply to @johns92118 "I HOPE YOU GET WHAT YOU NEED. I DONT KNOW WHERE YOU WENT TO SEE A..." + (show)
@johns92118

I HOPE YOU GET WHAT YOU NEED. I DONT KNOW WHERE YOU WENT TO SEE A DOCTOR BUT I TRAVELED TO ROCHESTER,MN TO SEE THE HEAD NUEROLOGIST THERE AND THAT STARTED ME ON MY JOURNEY i had the shunt put in a yearage last august and just lately i have been having headaches and my balance is not good again. i also shuffle my feet starting in the late afternoon (it is getting earlier lately) and yes my vision is blurey . i would wish you all the best and recomment the mayo clinic. they helped me greatly.

john ps i also may need another adjustment on my shunt

Jump to this post

I am returning to the Neuro surgeon in Los Angeles. I am hoping I just need an adjustment with the magnet for my shunt and not a totally new shunt. I'm too old for major surgery in my head. But, right now, I am having difficulty walking and having balance. I just walked my dog.....Oh my goodness. Good thing my dog understood that I cannot walk.

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1 reply
maxine50 | @maxine50 | Oct 25, 2023
In reply to @johns92118 "I HOPE YOU GET WHAT YOU NEED. I DONT KNOW WHERE YOU WENT TO SEE A..." + (show)
@johns92118

I HOPE YOU GET WHAT YOU NEED. I DONT KNOW WHERE YOU WENT TO SEE A DOCTOR BUT I TRAVELED TO ROCHESTER,MN TO SEE THE HEAD NUEROLOGIST THERE AND THAT STARTED ME ON MY JOURNEY i had the shunt put in a yearage last august and just lately i have been having headaches and my balance is not good again. i also shuffle my feet starting in the late afternoon (it is getting earlier lately) and yes my vision is blurey . i would wish you all the best and recomment the mayo clinic. they helped me greatly.

john ps i also may need another adjustment on my shunt

Jump to this post

I wish you well. Hopefully, all you need is the magnet adjustment.

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1 reply
johns92118 | @johns92118 | Oct 26, 2023
In reply to @maxine50 "I wish you well. Hopefully, all you need is the magnet adjustment." + (show)
@maxine50

I wish you well. Hopefully, all you need is the magnet adjustment.

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i have never talked with anyone else thar has hydrosepholus, let me know how thigs go with you and i will do the same

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johns92118 | @johns92118 | Dec 29, 2023

i have hydrosephalus and lately my walking is getting horrible i shuffle most of the time, is that a sign of too much fluid in the brain??

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1 reply
maxine50 | @maxine50 | Dec 30, 2023
In reply to @maxine50 "I am returning to the Neuro surgeon in Los Angeles. I am hoping I just need..." + (show)
@maxine50

I am returning to the Neuro surgeon in Los Angeles. I am hoping I just need an adjustment with the magnet for my shunt and not a totally new shunt. I'm too old for major surgery in my head. But, right now, I am having difficulty walking and having balance. I just walked my dog.....Oh my goodness. Good thing my dog understood that I cannot walk.

Jump to this post

Have it for many years and have had the shunt in my head adjusted as soon as I find that I cannot walk properly once again. I just returned from L.A. where I had my shunt adjusted by neurosurgeon. I've had it in my head for over five years now. If it stops working, you will know!!!

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maxine50 | @maxine50 | Dec 30, 2023
In reply to @johns92118 "i have hydrosephalus and lately my walking is getting horrible i shuffle most of the time,..." + (show)
@johns92118

i have hydrosephalus and lately my walking is getting horrible i shuffle most of the time, is that a sign of too much fluid in the brain??

Jump to this post

Yes, it could be. You need to see a doctor asap to get tested for it. You may need a shunt.

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johns92118 | @johns92118 | Dec 31, 2023

i have a shunt, it has been addjusted two times since putting it in, maybe one more time but i am afraid of a brain bleed. that is what the doctor told me i need to be careful of

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johns92118 | @johns92118 | Jan 1, 2024

i have hydrosephalus and have been adjusted two times in the last year. what is a revision? a lot of people have mentioned it. jusst not sure what it is. thank you whoever answers

john steeber

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spiku80 | @spiku80 | Dec 1, 2024
In reply to @johns92118 "I have hydrocephalus and wondering if anyone has heard input agent orange causing it. I am..." + (show)
@johns92118

I have hydrocephalus and wondering if anyone has heard input agent orange causing it. I am a Vietnam

M veteran and have had prostrate cancer and twice I have had bladder cancer also high blood pressure a
Lk these are presumed by the va to be caused by agent orange I will look for an answer thank you

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I’m dealing with high blood pressure, hydrocephalus, stokes, diabetes, and the onset of Parkinson’s disease in both my father and my uncle. Both were exposed to large amounts of agent orange, one being a paratrooper that jumped right into that fog.

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