Finally I can post! ETV

[Lauren88]

Finally! I tried to register repeatedly prior to the crash but failed to receive my activation e-mail so could not post! :mad: I have hydrocephalus (and cerebral palsy) resulting from an IVH sustained at my 14-week premature birth. After intermittent shunting (1 then 2, then ten years later back to 1) after a blockage on 14th Sept 2006 I had an Endoscopic Third Ventriculostomy (which I wasn't eligible for previously). This has completely knocked the stuffing out of me and I'm feeling very tired all the time - hard as I am now under pressure to get back to school! Anybody got ETV experience? How long did it take you to get back to normal?

Got to go now as have given self a headache being online for so long :rolleyes: but would love to hear from any of you - for an 18 year old whose oldest shunt only got to 7/7.5 years Lizard et al who have 20+ years surgery free are an inspiration! More later

Love

Lauren

[Nick,Brian,andJon'sMom]

I have no advice on the ETV but wanted to welcome you to the board. :)

Marcie

[LIZARD]

Welcome, Lauren! :)

I of course have not had an ETV, but I wanted to welcome you, too! :) I hope you enjoy being a member of our "family."


(((((((((((((HUGS))))))))))))))))))),

LIZARD :)

[Nikki_Poohs Mom]

Welcome! I don't have any first hand experience with an ETV, but there are those here that have. I'm sure they will be along soon to answer any questions.

http://bd.lilypie.com/KnPum4/.png

[GTF]

I had an ETV, aka 3rd ventriculostomy a few years ago.
Other then dropping my csf levels so low that I could hear and feel
what csf was left slooshing around in the Ventricular.
It filled.
A few weeks later they put a second shunt in because it didnt help.

George

[Lauren88]

for the welcomes everybody (much appreciated)! I'm looking forward to finally being able to join in all the discussion!

[kathleenandjoe]

Since Becca has been out of the O.R. for three years now, I may be out of the loop. . . but since when are IVH patients even candidates for an ETV? From what I remember - and I did A LOT of reading on it at the time Becca had her first ETV - bleeds (IVH) cause communicating hydro (meaning no actual blockages of the vents) and the CSF just does not reabsorb properly due to the bleed that occured. So how would an ETV relieve that? Maybe they have refined it somehow so that it works for you all too?

Anyway - - - my daughter, age 5, has congential hydro likely due to a blockage in between vents four and five (aqueductal stenosis) and a possible small bleed in utero. They'll never know for sure. She has right side hemiplegia and epilepsy. Doing really well though!

She had her first ETV at age 13 months or so. It failed (scarred over) at age 18 months and they redid it again. Then they found that there was an infection (likely the reason for the scarring in the first place) too late though - the second one also failed a month later. She then went back to a shunt. During both failures - she eventually showed classic high pressure symptoms like banging head due to pain, eye issues, even passing out once - then coming to like she was fine as it was blocking slowly over.

She now has a shunt and her recovery time seemed about the same for ETV and shunt surgeries - she was back on schedule at about 7-10 days later.

I would definately follow up with your NS and keep a look out for symptoms of high pressure - vommitting, eye problems, headache, balance issues, etc. that need instant attention. Did they put an access catheder/resevoir in to be able to tap for pressure still? They did this for Becca the first time. If they did, then you could have an infection lingering or growing slowly in your CSF fluid from the surgery. The bacteria use any foreign objects (shunts, resevoir, catheder) as a vehicle to multiply on. Any fever? Infection can show itself in fatigue first and usually occurs within three months of sugery.

Becca had 2 post-op infections. Not fun.

It is definately worth mentioning your fatigue - maybe they hit something during the surgery or your body is just struggling to recover due to an underlying or new problem. Could you be depressed becasue of all the pressure and surgery, etc for example? I would insist they still look for a physical reason though.

Best wishes and keep us posted.

Hugs,
Kathleen

[Lauren88]

Since Becca has been out of the O.R. for three years now, I may be out of the loop. . . but since when are IVH patients even candidates for an ETV? From what I remember - and I did A LOT of reading on it at the time Becca had her first ETV - bleeds (IVH) cause communicating hydro (meaning no actual blockages of the vents) and the CSF just does not reabsorb properly due to the bleed that occured. So how would an ETV relieve that? Maybe they have refined it somehow so that it works for you all too?

Anyway - - - my daughter, age 5, has congential hydro likely due to a blockage in between vents four and five (aqueductal stenosis) and a possible small bleed in utero. They'll never know for sure. She has right side hemiplegia and epilepsy. Doing really well though!

She had her first ETV at age 13 months or so. It failed (scarred over) at age 18 months and they redid it again. Then they found that there was an infection (likely the reason for the scarring in the first place) too late though - the second one also failed a month later. She then went back to a shunt. During both failures - she eventually showed classic high pressure symptoms like banging head due to pain, eye issues, even passing out once - then coming to like she was fine as it was blocking slowly over.

She now has a shunt and her recovery time seemed about the same for ETV and shunt surgeries - she was back on schedule at about 7-10 days later.

I would definately follow up with your NS and keep a look out for symptoms of high pressure - vommitting, eye problems, headache, balance issues, etc. that need instant attention. Did they put an access catheder/resevoir in to be able to tap for pressure still? They did this for Becca the first time. If they did, then you could have an infection lingering or growing slowly in your CSF fluid from the surgery. The bacteria use any foreign objects (shunts, resevoir, catheder) as a vehicle to multiply on. Any fever? Infection can show itself in fatigue first and usually occurs within three months of sugery.

Becca had 2 post-op infections. Not fun.

It is definately worth mentioning your fatigue - maybe they hit something during the surgery or your body is just struggling to recover due to an underlying or new problem. Could you be depressed becasue of all the pressure and surgery, etc for example? I would insist they still look for a physical reason though.

Best wishes and keep us posted.

Hugs,
Kathleen

Thanks for the info Kathleen. Apparently I don't have a reservoir because they don't do them in the hospital I go to (hopefully that means I won't have one - had one prior to having my last shunt put in and that's more than enough! totally not fun.)

I think I will get in touch with my local hydro association to find out what the normal state of play is, especially as they didn't even scan me before discharge. The general situation with me has been an open-access, go-in-if-there's-a-problem situation so no regular appointments, but maybe that needs to change, especially since my situation seems to be so unusual. I had my first (both VP) shunt fitted soon after my IVH, then when I was about 2, I had vision problems, characterised by a very obvious squint that didn't respond to patching. They put a second shunt in a voila, squint virtually imperceptible (I am short-sighted from a lazy eye however, on the side that my CP mainly affects - my left - but I don't know whether there's a link. I wear glasses but unless my shunt fails vision isn't really a problem.) I think I had a bunch of blockages around this time (I remember insisting on growing my hair after about age 7 because I was sick of hairdressers raking over my scars) but when those settled down I was OK till about age 9 or 10. Then my shunt began to block intermittently (whatdya know, as soon as they would scan me it would miraculously unblock :mad: ) with MAJOR headache, vomiting and by the time they actually operated I had papillodema and double vision. The transformation when they replaced the shunt was amazing though I was like, wow no headache! Soon after that though I fell off my trike and knocked myself out, concussed and feeling awful amazingly shunt was fine though. About a year later they were going to replace my shunt again due to a snapped tube in my neck but unfortunately my regular doc was on holiday and the guy that did the op looked about 24 :mad: Well apparently when he opened me up my other shunt was not working so he just assumed I only needed one :( tis what comes of being the patient who 'doesn't look like you have a blocked shunt' - my consultant, whom I sadly proved wrong many many times :( I did have ICP monitoring but at that time it didn't show anything. Then September of that year headache, vomiting back, back in the hospital, back to 2 shunts. That started off a horrendous line of blockages (the longest time I was out the operating theatre was 2 weeks) culminating in an infection. After they'd got rid of that, apparently they scanned me and found that some of the fluid had gone, so they turned off the EVDs to see if I still needed a shunt. I wasn't nearly as bad as I have been but was in pain so they put my right side shunt back in. Apparently I wasn't eligible for ETV then because my ventricles weren't big enough. That shunt lasted 5 1/2 years, had the op for the ETV on 14th Sept and here I am. The on-call surgeon who did the op didn't do anything with my shunt, so I still have it, coupled with a tube in my neck that they couldn't get out following the infection due to scar tissue. I don't feel as I have done when I have had blockages/infection before, I think I am recovering, just slowly, but I appreciate all input. By the way do you know of any cards etc like shunt alert cards that you could get an equivalent for an ETV? If you do am I able to get one and how (I live in the UK)? Thanks

I have however dealt with infuriating sleep issues which started roughly after the op in which they put back my right shunt (but not my left) and this still exists after the ETV. The issue is a terrible pulsating while lying down, which, while not what I would describe as painful, incredibly uncomfortable. It is present on my back and right side but is worst on my left (which is the side I sleep on!) I am getting by with the help of amitriptyline, (prior to taking it I only got about 3/4 hours sleep a night it was awful) but even if there isn't a cure a name or something would be nice, just so people don't think I'm just being lazy. MRI was normal and nobody seems to know anything. Any ideas?

Thanks

N.B I have been the depression route before and I don't think that is the case now, even though the fatigue is frustrating, but I am aware it is a possibility so will be aware if my feelings change.

[kathleenandjoe]

Sounds like you are doing well and have done your homework depsite all you've been through.

The hydo. assoc. has an ETV card - my daughter had one - they wil lsend one to you for sure.

Because you still have shunt - or even parts - it is fair to say that infection can breed there. And all strands are different - so it may not be like one you've had. Becca's second one took months to rear it's ugly head and was a "rare skin bug." Slow growing.

I would definately see the NS sometime in the next month regardless. The only scan to check for an ETV functioning is an MRI with flow study. You will need one of those in time.

Please do ask why all of the sudden you are a candidate for ETV. I too am curious and it is good to know their reasoning.

Hang in there and do keep us posted. I hope you feel better very soon, and that you're able to sleep sounder.

Peace,
Kathleen

[Spiritgal]

Hi Lauren!

Just wanted to say hi and welcome to the board. I was interested to read about your pulsating sensation when you lie down, because I have that too and it's MADDENING!! :mad: I've had it quite badly since having my latest shunt fitted, but then I'm incredibly pressure sensitive, so have always reacted to standing up from sitting and vice versa. After about 3 hours the pulsating dies down a bit but I find getting to sleep tricky too. I did speak to my NS about it and he said it's pressure changes occuring within the brain, and it especially happens when you lie down. Apparently some are far more sensitive to it than others, although it does sound like you get it BAD so it may be worth keepin' on at the docs for any answers. Sounds like you've been on a rough ride, so I sincerely hope you start to have an easier time soon. Jordan x

[Lauren88]

Thanks for the reply Kathleen - I will look up the hydro assoc web address and try and get an ETV card. SpiritGal, you have no idea how good it is to hear someone even has the slightest idea what I'm feeling! :mad: is definitely it lol when I have the pulsating I can't lie on my left side very long which sucks as it's the only way I sleep! I just keep sitting up (and changing pillows over as well (I sleep with 3 because I get dizzy when I lie flat,) , don't know why as there isn't a combo that can stop it, it's incredibly unpredictable, literally I can just turn my head and it will start! :mad: :( :confused: nobody seems to know what it is the nsg i saw about it before my ETV when I had one shunt but was well said it might be a vein thing but MRI was normal :confused: also I never had it when I had a shunt there and surely not needing a shunt would be better so why would it start now? :confused: me and my strange brain... anyway thanks for the support
***

[Austinsmom]

Hi and welcome,
I know very little about ETV's but I do know my son who is also 18, had a under draining problem while laying down and it helped him to prop his head up with one of those TV pillows( shaped like an over stuffed triangle) he slept better tilted up. it may help, But if I were you I would talk to the neurosurgeon about your symptoms.
hope thing start to get better soon for you
Deborah