Hydrocephalus/dorsal midbrain syndrome
 

Hi everyone,

I'm Lizzy, my husband Trevor was diagnosed with hydrocephalus in 2007 and with a blockage in his 3rd ventricle in May 2008. Trevor didn't have an accident and he had no sickness the doctors still don't know what caused it to this day. He had his 1st VP shunt inserted in December 2008 and in May 2012 we almost lost him because the doctors couldn't stop the fluid from building on his brain even after replacing the shunt and relocating it to the left hand side of his head, he has no memory of 16 days of May that year. In 2014 he developed a condition called Dorsal Midbrain Syndrome again, he had this in 2012 as well but it went away. After more surgery in 2014 he now has the Dorsal Midbrain Syndrome permently. I'm 100% sure that there are many people much worse off then us but I'm tired and frustrated and sad and feeling quite lost at this point we've been doing this for 8 years now and have lost everything we live off my $700 carers pension and it's hard. So just needed to vent, and was hoping someone else might have had a similar problem if so please say hi I would love to talk with anyone about Trevor's condition or anything else you might want to talk about. Sorry for the winge!

Hello
 

I have read quite a few post now and I wish everyone wellness and hope. I wish I knew what my husband has it might make it easier to talk with anyone but we don't and some days are ok and some are not I just don't know how to help him anymore. But I will keep trying and my thoughts are with all of you on this site as I think you all deserve medals.
Thank you so much

Don't give up on waiting for replies, Lizzy.
The forum sometimes are quiet.

I was just reading about Dorsal Midbrain Syndrome to understand and came across another name for it too.
Parinaud's Syndrome and Vertical Gaze Palsy.

I'll try to see if there are any other posts for either on any of the forums.

This is a problem affecting his eyes???

Yes Lara it is caused when the midbrain has to much pressure for to long.
Thanks for helping me I'm just very lost at the moment and I don't usually ask for help or anything really but I'm grateful for your attention thank you

No problem at all Lizzy.

Is this a shunt malfunction?
They can't fix this?

Edited to add: Hopefully some of the members of this forum who are familiar with hydrocephalus will drop by and see your posts and offer information if they can.

It sounded like damage from high pressures (which has been resolved). I understood one could go blind if high pressure is not addressed quickly enough, our child sees an ophthalmologist every 6-9 months but her pressures are wonky and are changing.

Yes a shunt or tube malfunction prob being they don't seem to move very quickly due to Trevor being such an unknown because he wasn't born with any condition he didn't get an illness or have an accident but each time something goes wrong they wait and wait and then we have to deal with the fallout.

Please keep a very close eye on those pressures as Trevor who is now 52 has been seeing an ophthalmologist (neuro) is this started 8years ago and now it is a permanent condition on top of everything else we have to deal with. I wish you all the good wish and thoughts for the future! Thanks for chatting with me.

Some waiting happens when one doesn't present in a clear cut way (which we have loads of experience with but we know lots of temporary shunt issues also pass) but there are things they can do and waiting too long is unacceptable - and the patient is not really in a position to advocate for themselves so you are stuck with being on top of things and learning when to push. No waiting should be due to not being born with it and if some surgeon gives you that then you need to light some fires under them or get some doctors who know better. Lots of surgeons treating adults are less familiar with hydrocephalus but the kids with this issue have been growing up for decades so being ignorant is not a solution.