Etv

[lindad]

Anyone know if it`s possible for ventricles to go back to normal after an etv?I was told I would have hydro forever,but latest mri shows normal vents now!

[LIZARD]

Having normal-sized vents does not mean you no longer have hydro. It just means it's effectively controlled. My vents have been normal-sized for most of my life, and I know I still have it.


LIZARD :)

[lindad]

Thanks Liz,if anyone knows ,you do!I was on here a lot 2 years ago as I went through a bad time after the op,then the anuerysm,found on post -op scan.I am a lot better now,everyone notices how I function better,hoping to get back to work soon.I just thought it odd that my vents were now normal,hope they stay that way & the etv keeps on working!My main problems afterwards were short term memory & foggy heads & doing a bit of research found other etvers suffered these problems too & still do.We just keep asking ourselves "why" as technically the op is working! Thanks for your reply,Lin UK

[slindsay]

Keep in mind too that pressure doesn't necessarily correlate with ventricle size. I believe symptoms are more related to pressure than ventricular size per se. My daughter has very small vents and they remained small even when she was in full blown shunt failure and unable to function. Doctors often use ventricle size (and the change in size) as a proxy (estimate) of pressure so they like to see the ventricles reduce after shunt insertion and/or etv but it's not absolutely required. Alex also had an ETV and they actually confirmed it was working via MRI (they want to see free fluid flow through the opening).

[lindad]

Thanks for your replies.I actually saw the flow on my mri scan,NS was happy everything was functioning ok,but couldn`t explain foggy heads etc.This condition has driven me nuts,but I`m pleased the vents are "normal" now & the flow seems ok.All the while I`m standing I guess I`m fine! Thanks again from a worrywort.(uk has very limited info for patients)

[lindad]

Hi, in reply to your query about CBIT.It is an experiment which seems to be working well here.It stands for Community Brain Injuries Team.I don`t think they have set up a site yet,but hoping with their growing success,they will do soon!
The team consists of physical,phsycological,rehabilitation workers.They help people to come to terms with brain problems ,physically & mentally.They helped me a lot.as it was a shock to have been told I would die if my hydro wasn`t dealt with.I knew next to nothing about the condition & was very lost & confused after the op,no-one to turn to ,only this board which has been great! I really feel too many of us get discharged from hospital & expected to pick up from before.That didn`t happen for me,I know others who it didn`t happen for too & still have problems they can`t explain.I know my brain was "squished" as the NS put it & it sure took a long time to settle!I thought I was going mad & wouldn`t function normally again,but time is a great healer & the Team explained that memory loss & depression/anxiety were common amongst people who had had a brain injury etc.

Every hospital should have a team like this,they help people so much.