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mlzeid
@mlzeid

Posts: 12
Joined: Jul 11, 2016

hydrocephalus

Posted by @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.

REPLY

Hello again @mlzeid, thank you for posing your quesiton regarding ongoing revisions. I see that you started a thread a few months ago on Hydrocephalus with overdrainage where you connected with some other members. You can find your old discussion here, http://mayocl.in/2sCmhXs.

In the meantime, I would also like to invite back some members you connected with to share their thoughts on revision surgery for hydrocephalus, @safetyshield, @predictable @cynaburst @rosesareredmylove2016 @thegoodwife.

@mlzeid, what have the physicians said about the repeated need for revision surgery?

Sorry for the need for so many revisions. I have been lucky and had the same shunt for 15 years but I got mine due to a brain tumor which was removed just after. I have heard of the need for many revisions. Sorry that it is affecting your daughter.

What type of shunt does she have? I have an adjustable one. It has been adjusted about 3 times in 3 years.

@williamk

What type of shunt does she have? I have an adjustable one. It has been adjusted about 3 times in 3 years.

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Welcome @williamk. What led to the shunt needing adjustment? What is it like getting an adjustment?

My husband has hydrosifalus and went through 4 brain surgries 1 was on his neck to remove scare tissue which opened the spinal fluid flow to his brain, now they said his pressure was to high. Then he went through a surgery to put a shunt in and it got infected so they took it out, and year later they put it in again. Now his brain is shifting it went from 3mm to 6mm to the left and the shunts on the right. Does anyone know the outcome of this if the doctors don’t know the cause or won’t take the shunt out.

@david33

My husband has hydrosifalus and went through 4 brain surgries 1 was on his neck to remove scare tissue which opened the spinal fluid flow to his brain, now they said his pressure was to high. Then he went through a surgery to put a shunt in and it got infected so they took it out, and year later they put it in again. Now his brain is shifting it went from 3mm to 6mm to the left and the shunts on the right. Does anyone know the outcome of this if the doctors don’t know the cause or won’t take the shunt out.

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Hi @david33
I moved your message in the Brain & Nervous System group, specifically to this discussion on hydrocephalus so that you can meet other members like @cynaburst @williamk @thegoodwife @wronnie888 and others. You may also wish to read or post to this discussion:

– hydrocephalus with overdrainage https://connect.mayoclinic.org/discussion/hydrocephalus-with-overdrainage/

Have the doctors explained why they think the shunt should stay in?

I too was diagnosed with hydrocephalus into thousand 13. Into thousand 16 I was told I had to have surgery because the fluid was still retaining. I had a shunt inserted in July 2016

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.

@user_chdb5e8ac

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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Hi Erin,
I confess that I’m not personally familiar with hydrocephalus, but it seems odd to me that you could not be fitted for a shunt. Shunts are used to treat pediatric hydocephalus and in adults. Was size the only issue for ruling out a shunt? Perhaps time for a second opinion?

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

@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..

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

Go to Buffalo NY UBMD Dr Fahrmbach and Dr R Reynolds

@user_chdb5e8ac

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.

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

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