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.