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Old 02-08-2016, 12:19 AM   #1
pogo
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Default revision #5 thoughts

DD, 9, just had her fifth revision last week. This one has had some rocky/weird issues - massive headache when she woke but seemed to clear after throwing up an hour later (hope just an obstruction), episodes of confusion after slowly cleared away (could have been seizure related but not sure) and residual vomiting did last a while. Still working on nausea. Worried about an obstruction occurring and not clearing. Nurses were very spooked with vomiting (not even once an hour), they called it a lot. I must be too used to vomiting, seemed less concerning than the confusion. They didn't do a post op CT but if confusion ever happens again I may ask for one as bleeding is a bigger concern.

So recovery is rockier than prior revisions but at least the 100% headache is mostly gone! So so very worth pushing for a revision. Seem to be back to minor over draining for now. The surgeon is hopeful this revision may be a sturdy enough system as the previous programmable was not operating quite right given the pressures they measured during surgery. Before this the surgeon repeatedly pointed out that a revsion may only temporarily help with headache. Limited options just suck. Seriously need better ways for surgeons to objectively record what's going on because it sure is tough to get them to change their minds when they think they know (based on no concrete evidence). Grr. Still, wish everyone had a surgeon at least as good as ours. Not looking forward to when DD transitions from pediatric surgeons.
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Old 02-08-2016, 09:32 AM   #2
Merl1n
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DD, 9, just had her fifth revision last week. This one has had some rocky/weird issues - massive headache when she woke but seemed to clear after throwing up an hour later (hope just an obstruction), episodes of confusion after slowly cleared away (could have been seizure related but not sure) and residual vomiting did last a while. Still working on nausea. Worried about an obstruction occurring and not clearing. Nurses were very spooked with vomiting (not even once an hour), they called it a lot. I must be too used to vomiting, seemed less concerning than the confusion. They didn't do a post op CT but if confusion ever happens again I may ask for one as bleeding is a bigger concern.

So recovery is rockier than prior revisions but at least the 100% headache is mostly gone! So so very worth pushing for a revision. Seem to be back to minor over draining for now. The surgeon is hopeful this revision may be a sturdy enough system as the previous programmable was not operating quite right given the pressures they measured during surgery. Before this the surgeon repeatedly pointed out that a revsion may only temporarily help with headache. Limited options just suck. Seriously need better ways for surgeons to objectively record what's going on because it sure is tough to get them to change their minds when they think they know (based on no concrete evidence). Grr. Still, wish everyone had a surgeon at least as good as ours. Not looking forward to when DD transitions from pediatric surgeons.
Hey Pogo,
Fifth revision? as a parent that must be hard. It's hard enough as the patient, but a parent..... ....I couldn't imagine.
The programmable valves certainly have issues. My initial surgeon insinuated that the changing of the valve was something I had done and was not an issue with the appliance itself. But upon investigating there seems to be a few issues. Every time I've had the device checked by the dr the value has changed and has needed readjustment. I have some awful issues with massive pressure behind my eyes, like they are going to explode from my skull, especially early morning and late at night. Is this valve related? I don't know, the dr's don't see me in the AM nor late PM when I'm symptomatic. They do their scans and say "all good" grrrr? Bloody dr's. I too get VERY annoyed with their know-it-all attitudes. They do not know it all

The headache has almost gone? Already? Well, you have one of the luckiest young ladies around. I'm almost jealous lol I'm 3yrs post shunt revision (6th operation) and I am yet to have a day clear of headaches. The severity and symptoms fluctuate so much I can never tell from onset how intense it may get nor how long it may last. Management can be a %^&*$#@. All I can say is make the most of everyday because tomorrow you never know ( a lesson I learnt the hard way )

Great to hear some good news
Merl1n
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Old 02-08-2016, 03:25 PM   #3
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Hi Merl1n,

I don't recall if you've mentioned when you were first shunted. For those shunted as children, slit ventricles are documented issue. My child has a history of slit ventricles / low compliance so when I tell surgeons that I clearly follow up by noting that imaging can miss what's going on, history of at least one obstruction without enlarged ventricles, yadda yadda... Then the surgeon on call is warned up front that symptoms are more important than images. I asked our child's surgeon to measure pressure during the surgery because I thought there could be a problem with the programmable valve. I know that isn't a completely accurate measure but I think it helped. He indicated it would mean chucking the old programmable and you know how conservative surgeons can be about things. Sometimes I think that is part of the patient problem when trying to get an issue addressed, our risk assessment is different from their risk assessment and QOL then tanks. Our past issues with the programmables is they get harder to reprogram (codmans not the strata we first had, but strata has big steps between settings that don't work) after a few MRIs. But the fixed pressure valves are also not an option because the pressures have been changing, actually have one of each in her shunt system. There is a reason OSV is not a good choice anymore but I've forgotten why. Bet there are more than a few adults who also have issues with imaging not telling the full story, they just don't have studies telling the docs about ways this comes out.

I don't think the number of revisions matters, our child's hospital experiences are rather mild compared to people with other conditions, just wish there were fewer doctors to deal with So it's just something we deal with. I think the parents whose child goes 20 years without a problem are more affected by a sudden shunt crisis. We aren't under the same illusions.

-pogo
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Old 02-09-2016, 08:37 PM   #4
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Hi Merl1n,

I don't recall if you've mentioned when you were first shunted. For those shunted as children, slit ventricles are documented issue. My child has a history of slit ventricles / low compliance so when I tell surgeons that I clearly follow up by noting that imaging can miss what's going on, history of at least one obstruction without enlarged ventricles, yadda yadda... Then the surgeon on call is warned up front that symptoms are more important than images. I asked our child's surgeon to measure pressure during the surgery because I thought there could be a problem with the programmable valve. I know that isn't a completely accurate measure but I think it helped. He indicated it would mean chucking the old programmable and you know how conservative surgeons can be about things. Sometimes I think that is part of the patient problem when trying to get an issue addressed, our risk assessment is different from their risk assessment and QOL then tanks. Our past issues with the programmables is they get harder to reprogram (codmans not the strata we first had, but strata has big steps between settings that don't work) after a few MRIs. But the fixed pressure valves are also not an option because the pressures have been changing, actually have one of each in her shunt system. There is a reason OSV is not a good choice anymore but I've forgotten why. Bet there are more than a few adults who also have issues with imaging not telling the full story, they just don't have studies telling the docs about ways this comes out.

I don't think the number of revisions matters, our child's hospital experiences are rather mild compared to people with other conditions, just wish there were fewer doctors to deal with So it's just something we deal with. I think the parents whose child goes 20 years without a problem are more affected by a sudden shunt crisis. We aren't under the same illusions.

-pogo
Hey Pogo,
My initial shunt was inserted at age 24, there had been issues/symptoms for the 24 yrs prior to this but none were investigated until one day whilst driving down the road I had a massive bright light in my sight and within 10minutes I couldn't see. My then girlfriend (now wife) took me to the dr and ordered him to do a scan, which he reluctantly agreed to do. At the time MRI was new technology, so a CT scan was performed. This showed a large area of fluid, but being CT it was not well defined. Post surgery another scan was performed which showed the fluid had been reduced but that there was a large mass still present within the ventricular space. 3 months later I was in having further surgery to reduce the size of the mass. I was having some awful symptoms but the dr's had operated, the dr's had fixed, my symptoms were again labelled psychosomatic "It's all in your head..."
Fast forward 16yrs and the shunt had fractured, they operated again and replaced the shunt. Things were not good at all post surgery. I saw my PCP, who again stated '...dr's had operated, the dr's had fixed..' but when I went for a routine scan and follow up with the surgeon things were far from OK. I had developed 'slit ventricle syndrome'. The surgeon was less than impressed and queried why I had not been to see him sooner. Problem being that to see him I needed a referral from my PCP, the same PCP who wrote my symptoms off. Grrrrr. So 3 weeks later I was back in hospital having yet further surgery. Since then things have not been good, OK, so if I'm honest things have been bloody terrible. I have not been able to return to my previous employment and now have been told it is highly unlikely I'll ever work again. For me its all a case of management. Pain management, medication management, symptom management. I've given up on the dr's having answers. They have theories, not answers, hell, I can workout the theories vs symptoms better than they can and that's without me having scans/pictures to view and diagnose. But as far as they are concerned, I'm just the patient, I wouldn't know. They have done years of study, they know more than me, so my opinion is ignored until they have images. Bloody dr's.

Merl1n

Last edited by Merl1n; 02-10-2016 at 04:58 AM.
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Old 02-23-2016, 07:06 AM   #5
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I've been researching several valves to begin discussing with my neurosurgeon and came across Aesculap's proGAV. It consists of a DP valve with an integrated secondary valve called ShuntAssistant. Does anyone have experience with this valve? It's suppose to give patients low opening pressure when lying down and adjusts to higher opening pressures when standing up.





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Old 02-23-2016, 06:07 PM   #6
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Originally Posted by jasn03w View Post
I've been researching several valves to begin discussing with my neurosurgeon and came across Aesculap's proGAV. It consists of a DP valve with an integrated secondary valve called ShuntAssistant. Does anyone have experience with this valve? It's suppose to give patients low opening pressure when lying down and adjusts to higher opening pressures when standing up.
Hi jasn03w,

This gets beyond me somewhat. The requirements/issues for kids can be quite different from adults. Things often need to be redone with growth (may be what triggered this somewhat), and sometimes the options don't work as well when one is short (like kids are). We may switch to a VA shunt in the future to reduce the over draining/siphoning if this continues to be a problem as she grows. I know siphoning is not exactly the same as over draining, think we are dealing with both factors but I think knowing one's problems exactly helps the surgeon make the best equipment choice. The shunt assistant doesn't sound right my child although the placement for kids, behind the ear, isn't a big issue unless that is where kids get problem with devices embedding into the wrong tissue. Adults would get that shunt assistant into the chest if I'm not mistaken.

Does anyone know if ICP monitoring helps one know exactly the issues and choose the most appropriate system? Seems quite limited from what I do understand (which I freely admit isn't sufficient).

Last edited by pogo; 02-23-2016 at 06:11 PM. Reason: grammar fix
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Old 02-23-2016, 06:10 PM   #7
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Hey Pogo,
My initial shunt was inserted at age 24, there had been issues/symptoms for the 24 yrs prior to this but none were investigated until one day whilst driving down the road I had a massive bright light in my sight and within 10minutes I couldn't see. My then girlfriend (now wife) took me to the dr and ordered him to do a scan, which he reluctantly agreed to do. At the time MRI was new technology, so a CT scan was performed. This showed a large area of fluid, but being CT it was not well defined. Post surgery another scan was performed which showed the fluid had been reduced but that there was a large mass still present within the ventricular space. 3 months later I was in having further surgery to reduce the size of the mass. I was having some awful symptoms but the dr's had operated, the dr's had fixed, my symptoms were again labelled psychosomatic "It's all in your head..."
Fast forward 16yrs and the shunt had fractured, they operated again and replaced the shunt. Things were not good at all post surgery. I saw my PCP, who again stated '...dr's had operated, the dr's had fixed..' but when I went for a routine scan and follow up with the surgeon things were far from OK. I had developed 'slit ventricle syndrome'. The surgeon was less than impressed and queried why I had not been to see him sooner. Problem being that to see him I needed a referral from my PCP, the same PCP who wrote my symptoms off. Grrrrr. So 3 weeks later I was back in hospital having yet further surgery. Since then things have not been good, OK, so if I'm honest things have been bloody terrible. I have not been able to return to my previous employment and now have been told it is highly unlikely I'll ever work again. For me its all a case of management. Pain management, medication management, symptom management. I've given up on the dr's having answers. They have theories, not answers, hell, I can workout the theories vs symptoms better than they can and that's without me having scans/pictures to view and diagnose. But as far as they are concerned, I'm just the patient, I wouldn't know. They have done years of study, they know more than me, so my opinion is ignored until they have images. Bloody dr's.

Merl1n
Wow, I hope you find regular & specialist doctors who trust you to know your own body soon. I think pediatric doctors are more responsive, but even that has limits.
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Old 02-24-2016, 07:52 AM   #8
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Wow, I hope you find regular & specialist doctors who trust you to know your own body soon. I think pediatric doctors are more responsive, but even that has limits.
Thanks Pogo, but that's a wish/dream for me. I do, now, have a pcp who is listening. But as far as neuros are concerned, where I live we have a very limited number. It seems if one gives a diagnosis others are VERY reluctant to revise or contradict the given diagnosis. I may need to travel interstate to actually obtain a fully independent opinion.
I was recently told by a neuro that my continuing pain is caused by CTTH (Chronic Tension Type Headaches). Now the old theory was that stress causes the muscles in the back of the neck to tighten, thus pulling on the back of the skull and scalp, causing the HA. Depending on who I talk to it seems this theory has been altered/updated. Some specialist believe the discomfort from a HA causes a frown and this pulls on the muscles through the scalp and exasperates the HA. Others believe it may be related to blood flow within the brain. When I mention this to other neuros I have been scoffed at and told that as the brain has no pain receptors, so my HA pain is not within the skull. It certainly feels like it is. Hence the statement "It's all in your head..."All I can confirm is that I'm in pain everyday. The intensity and duration are variable and I 'try' to push myself thru the pain at times, which probably does not help in the long run but I need to be active or I get a bit stir crazy lol.
So let's see what comes next. One day I'll wake up and it will all be gone WOW, now there's a wish lol
When I was working, prior to '13, I worked with people with disabilities. Primarily intellectual disabilities and brain injury clients but I have worked with the whole range of disabilities from physical to sensory, so I have seen some of the 'worst case scenarios', and as bad as things are for me, I know they could be a HELL of a lot worse. Now, this is going to sound very selfish, so I'll apologise before I say it, but when I'm at my worst I can look back at those clients and think "...well, at least I'm not there..." and I so easily could be. So if this is "as good as it gets" then I have to work within these limitations and that is difficult. Its all about management. Pain management, medication management and symptom management and that's what I do now. Manage

Merl
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Old 02-24-2016, 09:54 AM   #9
Merl1n
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Originally Posted by jasn03w View Post
I've been researching several valves to begin discussing with my neurosurgeon and came across Aesculap's proGAV. It consists of a DP valve with an integrated secondary valve called ShuntAssistant. Does anyone have experience with this valve? It's suppose to give patients low opening pressure when lying down and adjusts to higher opening pressures when standing up.
Hey Jasn,
Sorry, But I haven't heard of a twin valved shunt. Please let us know what your neuro has to say as I have a massive difficulty with positioning ie laying down and standing. I get dizzies to the point of collapsing and laying down I have a massive pounding headache. So much so that I hate going to bed due to pain.
As I say, let us know please

Merl1n
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Old 03-09-2016, 07:47 AM   #10
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Merl1n,

I met with my Neuro surgeon and here's what he told me. Aesculap's proGAV is a programmable valve that contains an anti siphon valve (ShuntAssistant) integrated in it. It's not like other anti siphon valves though. The shunt assistant allows the surgeon to use different opening pressues for the laying and standing positions, managing overdrainage complications, posture related headaches and patient discomfort. They also have a programmable ShuntAssistant called proSA which enables the surgeon to customize both valves opening pressure for when you're laying vs standing. Both programmable valves won't inadvertently reprogram from MRI scans or household magnets. Hope this helps.


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