Author Topic: problems with a lumbopleural shunt  (Read 1972 times)

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Offline andreamay

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problems with a lumbopleural shunt
« on: July 25, 2014, 12:13:10 AM »
Hello everyone,

I was wondered if anyone has had any issues with a lumbopleural shunt?

I had mine fitted last June then it was revised in August as it detached from my lung. Originally prof Pickard did my first one and he fitted one that was adjustable externally. Then when it detached the prof had retired and Mr Garnett took over, so when he revised my shunt he changed the valve to a non adjustable one.

Now since having this I had complained of breathlessness and pain especially in my lung/back, I've had icp monitoring, car infusion study....all came back frustratingly normal. Then out of the blue I had a call from Dr Higgins, following a must meeting he had reviewed my case and he advised me that he wanted to try more stenting.....hallelujah someone was listening. So 2 weeks ago I had another 3 stents inserted...making 12 altogether and most of then right sided stents expanded. Following that I had a ct scan to check them and at that very moment they discovered that my shunt was causing a lot of fluid build up on my lung. Furious I confronted Mr Garnett and I had another x Ray which says yes it is right that the fluid isn't being absorbed fast enough but I was faced with 3 choices.

1. Do nothing
2. Remove it
3. Wait and let Dr Higgins finish what he started

Obviously I have chosen option 3 at the moment, as there is a possibility that I will need bone removal and more stenting on the left. In the meantime should I get an infection then the shunt would need to be removed quickly.

I am still very cross as when I have complained....and I'm not a moaner I feel like I've been dismissed like a 12 year old who needs a spoonful of calpol! I do now feel vindicated that this complication has been found but I am very concerned at what needs to happen next. I've also heard that a non adjustable shunt isn't really suitable for iih sufferers. There isn't much information out there except it seems to be the surgeons choice. ?

So if anyone has any information I would be really grateful.

Andrea xx :bang
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Offline Keren

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Re: problems with a lumbopleural shunt
« Reply #1 on: July 25, 2014, 06:12:04 AM »
i dont have a shunt Andrea, hopefully some some of those other guys and gals will chime in with their info - Glad someone finally listened, know the frustration of not being listened to! just wanted to share a giant arrrrrrrrrrgggggggggggggggggggg!!!!!!!!!!!!! and say big hugs and much support!!!
 :grouphugs
Keren
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Offline andreamay

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Re: problems with a lumbopleural shunt
« Reply #2 on: July 25, 2014, 08:11:17 AM »
Thanks Keren xxxx
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Offline dabirg

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Re: problems with a lumbopleural shunt
« Reply #3 on: July 25, 2014, 02:21:24 PM »
you are not alone in feeling like this. 

did you get to meet a lady called Gill when you were at Addys ?  I think you may have plenty in common.

If you speak to five neurosurgeons you may get 5 different opinions.  in some ways i think this is good - they tell you what they think is best according to their experience rather than all telling a party line.

I havent heard of many having a lumbar pleural shunt so i can't comment there.
LP -> peritoneal shunts often don't have valves but it seems that other types normally do.
M's lp shunt works - but just not hard enough so she remains on drugs too.
How are you getting on after the latest round of shunting - I hope you are still feeling improvements.

Keep plugging away - they are hearing you - even if it doesnt feel like it at times.

I feel for you as this illness is hard enough

Offline andreamay

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Re: problems with a lumbopleural shunt
« Reply #4 on: July 26, 2014, 04:19:28 PM »
Thank you for your reply, no I didn't see Gill, shame it would be great to compare notes!

I still feel rough after my last stenting, but Dr h did say it would take a few weeks to settle. Fingers crossed xxx
Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.