I would be grateful to hear anyone’s experience with hydrocephalus . My daughter has multiple avms and this year has developed hydrocephalus . It took over three months to get to the diagnosis and she was in a severe state .

Should have said avms lol

My understanding is that an AVM causes Hydrocephalus to the extent that the AVM ruptures and the Hemorrhage forms a clot that blocks the free flow of CFS. This is caused Obstructive Hydrocephalus. I am not sure how an AVM on its own without a bleed would cause Hydrocephalus.

If you are not born with hydrocephalus it can develop later on if your brain has had any kind of trauma not just avm . Rebekah has only had one rupture 7 yrs ago . She has multiple avms and what we gained from the surgeon is they have blocked the ventricles . To be honest I understand all they told me I am more interested in if anybody has lasting symptoms . Rebekah can no longer walk by herself or balance has developed eye problems , that’s just a few x we have been told it can be up to a two year process to get any kind of baseline back we are eight months in but there is no progress x one of the worst things is fatigue it takes over her life cannot

Hi there. I have an AVM of the Cerebellum that was disovered when I was 14 to the occurrence of hydrocephalus. I started getting really had headaches and vomiting when I was 12 but doctors diagnosed migraine and I took all sorts of tablets. By 14 I was on the verge of a brain haemorrhage but luckily for me I was sent for a CT scan and my condition was discovered, I had a VP Shunt put in and it has been replaced 4 time when it blocked and the hydrocephalus symptoms returned. My AVM is unruptured.


This is a late reply but Rebekah got really poorly and developed untreatable swelling in her brain . My daughter passed away in her sleep from a brain avm rupture on 3/7/18 x we had her funeral yesterday x I hope she is at peace now and is no longer suffering as she has done more so in the last two yrs xx my heart is truly broken I miss her desperately x


I’m so sorry to hear about Rebekah and can’t imagine how you feel. As you say, the greatest comfort is to know she isn’t suffering anymore.

However we can help, just reach out if you need to. We can be here just as much as before.

Lots of love,



Our sincere condolences on Rebekah’s passing. We hope that we can continue to be a support to you and the family.

Peace and love, Sarah, from all of us

Seenie and the entire Moderator Support team at Ben’s Friends: TJ, Azurelle and Merl.

Sarah, my thoughts and prayers are with you. I am so sorry to hear this, know that we are here for you if ever you want or need. John.