Quantcast

AVM Survivors Network

Head pressure post DAVF craniotomy

Hi I had a craniotomy 3 weeks ago,at the back of my head ,I had an unruptured davf. I was recovering ok,till last week,went to a and e,had a CT scan that showed early features of hydrocephalus!! They contacted my neuro hospital who said I had always had a ventricular system like that! So I got sent home,I am getting worse,can’t sleep at night for the pain,better when up and get dizzy when walking. Rang my neuro hospital and email end today and now have an appointment for next week. Feeling scared as don’t understand confusion over results any help please

Hey @Castle

It sounds good that you’ve got an appointment for next week. And necessary but also encouraging that they are listening to you.

Meanwhile, I think the trick is to minimise your head pressure. I found that mine was worse when I was lying down. Using lots of pillows to prop me up reduced the head pressure but it’s a difficult position to sleep in. You should be able to get to next week, though?

Craniotomy is a massive assault on your head, so it is perhaps not to be unexpected to have some complications like this. Main thing is to keep calm, keep your blood pressure in a normal range and, if you feel in a dangerous position, go to A&E. They really only want to see you when you’re already having an acute issue but if you think you might any minute become acute, they will welcome you in as well. Just because you’ve got an appointment for next week doesn’t mean you should hold on if you get worse.

I have no idea whether some of what you are experiencing is hydrocephalus or a bit of a bleed has blocked your cerebrospinal fluid or a bit of swelling or a bit of DAVF still discharging into a vein somewhere. There are probably a handful of things that could be going on. So, it’s the right thing to have got the attention of the neuro and an appointment next week.

Thinking of you,

Richard

2 Likes

Thankyou,will find out Wednesday,keep you posted,thankyou x

2 Likes

Hi,went to my neuro surgeon, apparently I have always had a swollen part and that is the norm for me!! I never knew,as it’s only 3weeks ,I am to take it slowly. Just wondering how long everyone’s of sick for,as see on Google it says 8 weeks,does anyone have longer? Worried as can’t drive for 6 months,but no better s or train to my work,see how I feel x

1 Like

@Castle There are drugs that can help when you have swelling I know there is one my stroke dr at Stanford had me take for months after I got out the hospital I am sorry I dont know the name but I believe it at first my pharmacy did not have it so my husband hand to get a powder from the camping store and I had to drink it for a few days and it tasted terrible. I think even the pill tasted bad too. But it helped.
Then I was still having terrible head pain my pain neuro put me on acetazolamide which many of my fellow rare stroke people CVST stroke patients get put on for IH take but it made me sick.
I still do have head pain. Sometimes Ice helps and sometimes heat. Please do take it slow .
Hugs Angela

@Castle

I can’t tell you how long recovery is from craniotomy as I have no experience. It seems quite variable with some people feeling pretty good very soon and others taking longer.

In terms of getting to work, it may be that you can get support, for example with taxi fares. I’ve not looked into this myself but the following scheme seems relevant. Whether it will be the right thing for you, I don’t know but I thought it might be useful to share.

Very best wishes

Richard

1 Like

Hey Castle,
I have to agree with Richard ‘Craniotomy is a massive assault on your head…’ and ‘…It seems quite variable…’ But I have to also say 3 weeks is REALLY early in your recovery. Initially I tried to measure my recovery by what others had been through and they say 6 to 8 weeks and the body has fully healed. That ‘6 to 8 weeks’ maybe correct for bone and muscle recovery, but the brain can take longer, much LONGER. Do not be trying to push your recovery, it takes as long as it takes. I say this because I pushed mine and pushed too hard, too soon, doing myself more harm than good and ended up requiring further surgery. I wanted to be right and I wanted it right bloody NOW!!

No 2 brains are exactly the same, no 2 surgeries are exactly the same and due to this no 2 recoveries are exactly the same. Trying to gauge your body’s recovery by others experience can only lead to disappointment if things don’t work the same way (Well, it did for me anyway). You state “…apparently I have always had a swollen part and that is the norm for me!!..” And that maybe so BUT if you are having symptoms, it being ‘normal for you’ or not, if you have signs of hydrocephalus, that NEEDS to be managed. There are a couple of differing forms of hydro, communicating hydro with some drainage and non-communicating with no drainage. There’s not a lot of space within our skulls, we need to have balance of blood vs brain matter vs cerebral spinal fluid (CSF), if one of those things is out of balance I become symptomatic. We produce around 600ml of CSF/day. If we only drain/absorb 500ml/day that leaves 100ml extra. In less than a week we have retained an additional 600ml,

You ask “…does anyone have longer?” I have had the ‘joy’ (NOT) of enduring a few neurosurgeries (6 so far), no 2 of my own recoveries have been the same and each has knocked me harder and harder. The initial surgery I recovered fairly well from and returned to work, part time at first, within the month. With the last surgery knocking me the hardest. That was in 2013 and I haven’t been able to return to work since. For me a big part of the problem is that my symptoms fluctuate massively, I often explain it as ‘Today I could leap a building in a single bound (OK, so a bit of an exaggeration), but tomorrow I’m lucky to be able to crawl out of bed. I never can tell’

My recommendation try and get an independent opinion. This can be difficult in some areas as the medical fraternity can be small and in which case the neuro community is even smaller ie "I know ‘Dr John’. He’s a good man. If he says its ‘X’, then it must be ‘X’ " and no further investigations take place.
I say this because I have had a very similar situation. I questioned the surgeon (They DO NOT like being questioned) and was accused of trying to obtain ammunition to sue. I had nor have no intention of ever suing. In my view if they didn’t operate I’d be dead. I was looking for answers not money, but he became really defensive. From then on trying to get an independent opinion locally was impossible. I had to see an interstate specialist to get a report done.

Merl from the Moderator Support Team

1 Like