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Anyone had an ETV brain operation?

Posted: May 8th, 2021, 9:59 am
by raybarrow
Hi,
Bit of a long shot but I'll ask. 
Background, Mrs B has had difficulty walking for the last year or so.  After 15/20 minutes gets tired, not out of breath, and starts to scuff/shuffle her feet.  An MRI showed a cyst/fluid on the brain, which after a second MRI, with no change, is likely/possibly something she may have had since she was very young. The Multidisciplinary Team at the QE Hospital, after ruling out Parkinsons and the like (no other signs or symptoms) they are offering an Endoscopic Third Ventriculostomy (ETV) as the least invasive option.  Basically drill a hole in her head to provide a better drainage channel for the fluid.  A low risk op, but of course being the head, runs the risk of stroke if a bleed occurs.
Mrs B is having private physio for her mobility. We were hoping that physio would be a better option but her physiotherapist says that what the physio will do is maintain her present mobility but not make a great improvement on its own.
We have spoken to the consultant but are looking for anybody who has had, or knows someone who has had, or knows about this op. 
Questions:
1.  Was it successful?
2.  If so is the difference more or less immediate or does it get better over time?

Obviously this requires serious consideration given that 64 is no age these days to be shuffling around.  Hospital will be phoning for a further talk on Friday and if we say yes on Friday Mrs B could have this done within a few weeks.  So no waiting for months and months.
Any help or comments would be appreciated.
Ray and Lorraine.

Re: Anyone had an ETV brain operation?

Posted: May 8th, 2021, 10:12 am
by GrahamPlatt
So if I understand you correctly, you mean a form of hydrocephaly. Sounds like it’ll not get better unless drainage is provided, and more than likely would progress. If it was me, I’d go for it. Anyway, whatever you decide, best of luck.

Re: Anyone had an ETV brain operation?

Posted: May 8th, 2021, 11:58 am
by Redmires
The 'shuffling of feet' rang a bell with me as I've recently listened to a Radio 4 'Inside Health' programme about the condition. I don't know how relevant it is but might be worth a listen. Hope this helps.

Listeners David and Barbara tell us about a treatable condition called normal pressure hydrocephalus that is often mistaken for dementia.

https://www.bbc.co.uk/programmes/m000sqly

Re: Anyone had an ETV brain operation?

Posted: May 8th, 2021, 1:48 pm
by GrahamPlatt
From 19' 35"

Re: Anyone had an ETV brain operation?

Posted: May 9th, 2021, 8:45 am
by raybarrow
Hi,

Thanks folks, the radio programme was very useful. The sypmtoms are more or less the same although not that adavanced yet. Mrs B feels that, as has been said, do it now while she is otherwise reasonably healthy and more likely a 'reversbile' condition. The good news is that there is no waiting list of any significance and no young children, job, holidays (remember those?) etc to work around.

Cheers,
Ray.

Re: Anyone had an ETV brain operation?

Posted: May 9th, 2021, 9:27 am
by stewamax
I am not a medic.
My wife has one of the less common forms of brain damage (not Parkinsons) that initially presented as excessive anxiety, tiredness and shortened gait, so am familiar with the lengthy, complex, imprecise and uncertain diagnostic process that patients need to undergo.
So could OP perhaps elaborate the 'shuffling' he mentions; is this dragging the feet or normal 'foot-lifting' but with a shortened stride* ?
If the latter, it is so characteristic of certain forms of brain damage that is may be worth asking for a DaTSCAN (qv) which, like an MRI, is quick and painless but involves a preceding injection; it is now widely available though the NHS and many hospitals use an external 'scan wagon' for it.

* watch e.g. clips of John Betjeman walk (it could be coincidence but he was later found to have Parkinsons)