1. < Brain & Nervous System

hydrocephalus

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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sumera | @sumera | Dec 3, 2017
In reply to @cynaburst "There is another procedure that treats hydrocephalus called endoscopic third ventriculostomy that does not require a..." + (show)
@cynaburst

There is another procedure that treats hydrocephalus called endoscopic third ventriculostomy that does not require a shunt, though it is my understanding that it accomplishes the same thing. Maybe that is a possibility? It seems like a second opinion might be in order? I would go to a neurosurgeon with lots of experience in hydrocephalus. Good luck.
https://en.wikipedia.org/wiki/Endoscopic_third_ventriculostomy

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first we choose to do that only third ventricle endoscopic.. and endoscopic has been done. bt we dont ind much benefits from it.there was an infection in her brain so drs told shunt wont work accordingly..

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 3, 2017
In reply to @cynaburst "There is another procedure that treats hydrocephalus called endoscopic third ventriculostomy that does not require a..." + (show)
@cynaburst

There is another procedure that treats hydrocephalus called endoscopic third ventriculostomy that does not require a shunt, though it is my understanding that it accomplishes the same thing. Maybe that is a possibility? It seems like a second opinion might be in order? I would go to a neurosurgeon with lots of experience in hydrocephalus. Good luck.
https://en.wikipedia.org/wiki/Endoscopic_third_ventriculostomy

Jump to this post

I'm sorry to hear that, Sumera. What are your options now?

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Rita Rumph | @ritarumph2017 | Dec 3, 2017

Go to Buffalo NY UBMD Dr Fahrmbach and Dr R Reynolds

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MGMolly | @Erinmfs | Dec 4, 2017
In reply to @Erinmfs "Hi, I've been diagnosed with acqueduct stenosis, brain surgeon said my ventricles were not large enough..." + (show)
@Erinmfs

Hi, I've been diagnosed with acqueduct stenosis, brain surgeon said my ventricles were not large enough for a shunt. I'm 51 years old. I guess I'm headed toward having normal pressure hydrocephalus, but I'm not there yet.

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Thank you for asking as I’m frustrated . The neurosurgeon I consulted with said my ventricles aren’t large enough for a shunt. The neurologist implies I have to have a clinical presentation of NPH to qualify for surgery, meaning that I have dementia full time . Right now I’m episodic, and I’ve been hospitalized 9 times. It seems that heat and exercise are difficult for me.

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MGMolly | @Erinmfs | Dec 5, 2017
In reply to @cynaburst "There is another procedure that treats hydrocephalus called endoscopic third ventriculostomy that does not require a..." + (show)
@cynaburst

There is another procedure that treats hydrocephalus called endoscopic third ventriculostomy that does not require a shunt, though it is my understanding that it accomplishes the same thing. Maybe that is a possibility? It seems like a second opinion might be in order? I would go to a neurosurgeon with lots of experience in hydrocephalus. Good luck.
https://en.wikipedia.org/wiki/Endoscopic_third_ventriculostomy

Jump to this post

What symptoms did you have prior to ETV? How did you decide to have the surgery?

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raychelk22 | @raychelk22 | Feb 10, 2018

There is a surgery that you should look into and research! They is called Choroid Plexus Cauterization (CPC) and Endoscopic Third Ventriculostomy (ETV). I hope this helps!!

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johns92118 | @johns92118 | Oct 23, 2023

this may be off topic a bit but was wondering if anyone has heard about hydrocepholus caused by agent orange. i was in vietnam and also have bladder cancer and prostrate cancer its all quiet now. oh yes i am 80 yrs old and goy the cancers when i was 75 years old. the hydrocephalus came on after the second bladder cancer surgery. any help would be appreciated thankyou

john

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johns92118 | @johns92118 | Oct 23, 2023

Hello my name is John and I have hydrosephaus I got it just after my second bladder cancer surgery. The vA gave me a rating for disability also prostrate cancer the cancers were caused by agent orange from Vietnam. I was there ion the service has any one got that from agent orange. It is a nerve thing thanks for taking time to read this

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1 reply
maxine50 | @maxine50 | Oct 25, 2023
In reply to @johns92118 "Hello my name is John and I have hydrosephaus I got it just after my second..." + (show)
@johns92118

Hello my name is John and I have hydrosephaus I got it just after my second bladder cancer surgery. The vA gave me a rating for disability also prostrate cancer the cancers were caused by agent orange from Vietnam. I was there ion the service has any one got that from agent orange. It is a nerve thing thanks for taking time to read this

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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.

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1 reply
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.

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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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