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06-08-2011, 11:45 AM | #1 | ||
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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.
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06-09-2011, 11:04 PM | #2 | ||
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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. |
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10-24-2011, 09:07 PM | #3 | ||
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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
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10-25-2011, 09:58 PM | #4 | ||
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Why can't they get it right. I know 'practice makes perfect', but 99 revisions. That is insane. |
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06-09-2011, 11:10 PM | #5 | ||
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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. |
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06-10-2011, 11:38 AM | #6 | ||
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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
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07-06-2011, 12:10 AM | #7 | ||
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07-24-2011, 06:43 AM | #8 | ||
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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! |
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09-06-2011, 11:23 AM | #9 | ||
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10-20-2011, 04:30 AM | #10 | ||
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In Remembrance
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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
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"Ponygirl" Previously, "Giggles35". Phyllis |
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