Reply
 
Thread Tools Display Modes
Old 06-08-2011, 11:45 AM #1
cr0604 cr0604 is offline
New Member
 
Join Date: Jun 2011
Location: Houston
Posts: 3
8 yr Member
cr0604 cr0604 is offline
New Member
 
Join Date: Jun 2011
Location: Houston
Posts: 3
8 yr Member
Default Just need someone to talk to.

Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, everytime I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
cr0604 is offline   Reply With QuoteReply With Quote
Old 06-09-2011, 11:04 PM #2
RagahRagah RagahRagah is offline
Junior Member
 
Join Date: Feb 2011
Posts: 6
8 yr Member
RagahRagah RagahRagah is offline
Junior Member
 
Join Date: Feb 2011
Posts: 6
8 yr Member
Default

Hello there. I'm pretty young at 24 but I've had a shunt since I was about 11 and I am actually a pretty fortunate case, knock on wood; had a lot of revisions in a short amount of time but have been fine since 1999.

As far as your questions, it all depends on the challenges your child will face further on down the line (every person is different, obviously); for me, my Hydro really crushes my mental capacity. I luckily don't really have any issues with intelligence but I have a very poor short-term memory. Physically? Depends. I studied martial arts as a kid before my diagnosis and shunt placement but it wasn't long before my neurologist cleared me, barring the circumstances.

Sadly you probably won't know your child's limitations until he grows up. As far as what to watch out for, really just a lot of the traditional symptoms occurring at once. As far as I know everyone's different; some people live with headaches and others having headaches is an indicator of something being wrong. The one thing you can be certain of that means something is wrong is sundowning, which is simply a person's inability to keep their eyes level or raised. I knowingly realized in 99 when I had my last malfunction that something was wrong because I suffered from this, along with extreme drowsiness and blurry vision (all strong warning signs) along with headaches.
RagahRagah is offline   Reply With QuoteReply With Quote
Old 06-09-2011, 11:10 PM #3
RagahRagah RagahRagah is offline
Junior Member
 
Join Date: Feb 2011
Posts: 6
8 yr Member
RagahRagah RagahRagah is offline
Junior Member
 
Join Date: Feb 2011
Posts: 6
8 yr Member
Default

Hi there. It's difficult to say because it varies by person. You probably won't know your son's limitations until he grows up. Myself, I am only 24 but have had Hydro since I was 11. Luckily I'm more fortunate than others; I had my last revision in 1999 and have been fine since.

The most important thing is identifying a malfunction. Some symptoms seem like warnings with some and no big deal for others (some live with headaches for their whole lives and for some headaches are abnormal, even a warning sign). But a few that should serve a REAL warning are "sundowning" (inability to keep eyes level or raises), blurriness of vision and especially extreme drowsiness. I had all the following on my last malfunction (which was the one I had in 99) and was aware of it.

My own limitations are thankfully not damaging to my intellect but my attention span and short-term memory are very poor. Physically there's no problem other than the obvious higher level of vulnerability than others; I studied martial arts before my diagnosis, but it wasn't long after fully recovering my neurologist ok'd my return (given the circumstances). I'm honestly not aware of many hydro patients that go on to accomplish physical fame of any kind but there are plenty who are successful.

Hope I helped some.
RagahRagah is offline   Reply With QuoteReply With Quote
Old 06-10-2011, 11:38 AM #4
lalahecky lalahecky is offline
New Member
 
Join Date: Jun 2011
Posts: 3
8 yr Member
lalahecky lalahecky is offline
New Member
 
Join Date: Jun 2011
Posts: 3
8 yr Member
Default Please help me!!

I have been dealing with horrific headaches, dizziness, nausea and vomitting for nearly 2 weeks. I was told that I have slit ventricle syndrome and now the apparently the ventricle has collapsed on the shunt. My shunt {medtronic strata w/siphon control} cannot depress the resevoir, it's just rock hard. I apparently have very low icp according to the shunt tap, but I had a lp also and they said the pressure was 10.4. I am growing very concerned since everything I read tells me that the shunt not depressing indicates a blockage and now I'm supposed to go in and have the medtronic person reprogram it at a higher pressure. My concerns are two-fold, since my shunt also has an anti siphon device, which clearly did not work, the valve cannot depress indicating blockage, what in the heck would make them think that it could be reprogrammed at this point? I am very concerned, since the possible complications at this point are severe. I do not know what to do??? The neurosurgeon was set to switch out my shunt, but says I'm inoperable since the ventricular collapse...what the heck is going to happen to me? All I can do now is lay down and even at that I still have a headache and nausea. They gave me zofran for nausea, but I'm useless anymore...please any info would help
lalahecky is offline   Reply With QuoteReply With Quote
Old 07-06-2011, 12:10 AM #5
CSF Leak Mary CSF Leak Mary is offline
Junior Member
 
Join Date: Jul 2011
Location: Erie, PA
Posts: 6
8 yr Member
CSF Leak Mary CSF Leak Mary is offline
Junior Member
 
Join Date: Jul 2011
Location: Erie, PA
Posts: 6
8 yr Member
Default

Quote:
Originally Posted by lalahecky View Post
I have been dealing with horrific headaches, dizziness, nausea and vomitting for nearly 2 weeks. I was told that I have slit ventricle syndrome and now the apparently the ventricle has collapsed on the shunt. My shunt {medtronic strata w/siphon control} cannot depress the resevoir, it's just rock hard. I apparently have very low icp according to the shunt tap, but I had a lp also and they said the pressure was 10.4. I am growing very concerned since everything I read tells me that the shunt not depressing indicates a blockage and now I'm supposed to go in and have the medtronic person reprogram it at a higher pressure. My concerns are two-fold, since my shunt also has an anti siphon device, which clearly did not work, the valve cannot depress indicating blockage, what in the heck would make them think that it could be reprogrammed at this point? I am very concerned, since the possible complications at this point are severe. I do not know what to do??? The neurosurgeon was set to switch out my shunt, but says I'm inoperable since the ventricular collapse...what the heck is going to happen to me? All I can do now is lay down and even at that I still have a headache and nausea. They gave me zofran for nausea, but I'm useless anymore...please any info would help
I wish I had answers but since I do not I'll offer you prayers
CSF Leak Mary is offline   Reply With QuoteReply With Quote
Old 07-24-2011, 06:43 AM #6
gizzy_gal gizzy_gal is offline
Junior Member
 
Join Date: Nov 2010
Location: Tasmania, Australia
Posts: 12
8 yr Member
gizzy_gal gizzy_gal is offline
Junior Member
 
Join Date: Nov 2010
Location: Tasmania, Australia
Posts: 12
8 yr Member
Default

Quote:
Originally Posted by cr0604 View Post
Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, everytime I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
I have been very fortunate with my shunt, I am 22 and have had shunts since birth. My parents were told when I was a baby that I would probably never lead a normal life, and yet here I am! I am currently studying a university degree in Psychology and have never let my shunt hold me back. I did all the things that 'normal' kids did when I was growing up, I played hockey, I fell out of trees, I rode a bike.....Shunts are extremely resilient things, they are made to handle the knocks and bumps of life.
While every child is different most kids with shunts lead a completely normal life. If you ever have any questions I would be happy to help where I can, as I know everyone else on here will too.
Best of luck with everything!
gizzy_gal is offline   Reply With QuoteReply With Quote
Old 09-06-2011, 11:23 AM #7
carleecolt carleecolt is offline
Junior Member
 
Join Date: Sep 2011
Posts: 14
8 yr Member
carleecolt carleecolt is offline
Junior Member
 
Join Date: Sep 2011
Posts: 14
8 yr Member
Default

Quote:
Originally Posted by cr0604 View Post
Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, everytime I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
Taking care of my grandma, I know exactly how you feel. PM me if you want to talk.
carleecolt is offline   Reply With QuoteReply With Quote
Old 10-20-2011, 04:30 AM #8
Ponygirl Ponygirl is offline
In Remembrance
 
Join Date: Aug 2006
Location: Waltham, Ma.
Posts: 451
10 yr Member
Ponygirl Ponygirl is offline
In Remembrance
 
Join Date: Aug 2006
Location: Waltham, Ma.
Posts: 451
My Mood: Just need someone to talk to.
10 yr Member
Thumbs up cr0604

I know, it's been a while, since, you've been here. For me, also!
Not sure, whether, you'll pop in, again, but, I really wanted to say, I really,
do understand how you feel. It really is scary when you have to have
something done, involving, the brain. I want you to know, I've been there.
I had my first shunt inserted when I was only, a few months old. I was born
with Spina Bifida, which, always, requires a shunt. Anyhow, I just want
you to know, shunt surgery *can* be *extremely* successful!! Again, I had my 1st surgery at a few months old. My 2nd surgery, (a revision,) wasn't needed, until, I was nine!! And that was only, because, I was getting taller, so, my shunt was shrinking. It wasn't because, there was a problem. The shunt does get shorter as the person grows. Therefore,
the number of revisions depends, on, how tall the person will get. I can tell you, I haven't had *any* problem, since, I was nine and, I'm 44, now!! So, I really want you to know, having a shunt inserted can be a very successful and, relatively, simple surgery!! Hope I've helped!!

Phyllis
__________________
"Ponygirl"
Previously, "Giggles35".

Phyllis
Ponygirl is offline   Reply With QuoteReply With Quote
Old 10-23-2011, 10:26 AM #9
lcms0516 lcms0516 is offline
Junior Member
 
Join Date: Jan 2008
Location: Maryland suburbs of DC
Posts: 65
10 yr Member
lcms0516 lcms0516 is offline
Junior Member
 
Join Date: Jan 2008
Location: Maryland suburbs of DC
Posts: 65
10 yr Member
Exclamation

Quote:
Originally Posted by cr0604 View Post
Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, every time I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
I was the same age as your son, when I had my first shunt put in.

The one thing you should be careful of is, your son hitting his head. Because that can cause a shunt failure. Then you will have to deal with the medical system stalling to get him the proper help.

My (ex)fiancee was physically abused as a child by her step-father having hit her head on numerous occasions, the whole time her own mother denying that the abuse was ever taking place. They even refused to let her go live with her father.

That was until she finally was able to leave the home.

When my (ex)fiancee n' I got engaged, she had told me about the physical abuse and her constant headaches. For seventeen years(1985-2002), after she left her parent's house, she had been told that she was just having migraine headaches. The first time she had a 'migraine' headache and, I took her to the hospital, the ER docs' just wanted to give her a quick pain med and send us on our way. I vehemently told them, that considering her abuse history and 'migraine' headaches, that she needed more than a 'quick fix' by the ER. I insisted that they do x-rays and CT-Scans of her head because there was something more than a 'migraine' going on.

She was even accused of lying. I demanded to see her x-rays. Normally, A hospital won't do that on such a quick demand. Being a Hydro patient myself and having seen countless scans of my own, when I saw her scans, I could see her Hydrocephalus as clear as the hand in front of my face. It was at that ER visit, that she was finally and properly diagnosed with Hydrocephalus.

We moved to Duluth(Minnesota) in Nov.'02 and, her first VP shunt was installed in Mar.'03.

She hit her head on 'black ice' in Dec.'05. For nine months I tried to get her in to see her neurologist to get the obvious problem fixed. Her neurologist and her neurosurgeon kept denying that her shunt was broken. I finally had enough and went to a neurosurgeon at a neighboring hospital. I told them the situation. At her first appointment, the CT-Scans and MRI scans were shown to the new neurosurgeon. The neurosurgeon was aghast at how the original neurosurgeon and neurologist could have missed the problem. Her VP was embedded in her brain tissue. She had a shunt revision within a month.

The point of my relating those two incidents is, that you will have to press the doctors hard sometimes, to get them to realize what the problem is.

The word 'normal', is subjective. What is 'normal' to one person, is not 'normal' to another person. With good healthcare and schooling, your son should be able to lead a 'normal' life.
lcms0516 is offline   Reply With QuoteReply With Quote
Old 10-24-2011, 09:07 PM #10
Jesse_Bulldog Jesse_Bulldog is offline
Junior Member
 
Join Date: Oct 2011
Location: Detroit, MI
Posts: 8
8 yr Member
Jesse_Bulldog Jesse_Bulldog is offline
Junior Member
 
Join Date: Oct 2011
Location: Detroit, MI
Posts: 8
8 yr Member
Default

I've had 99 revisions, so I know about how things work and just wanted to give you alot of credit for what you said. That's a better answer then most Dr.'s give
Jesse_Bulldog is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
just need to talk katmcd Anxiety and OCD 4 12-05-2009 11:35 AM
Wonder 123: Come talk with me! <3 megveg Survivors of Suicide 25 07-30-2008 03:36 PM
help, someone, anyone to talk too steash Coping with Grief & Loss 13 10-26-2007 04:14 PM
need to talk LENNY New Member Introductions 6 07-09-2007 02:33 PM
anybody want to talk about T day? Mari Bipolar Disorder 5 11-18-2006 03:42 PM


All times are GMT -5. The time now is 12:54 PM.

Powered by vBulletin • Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.