Post brain injury support

[letsdothis5]

Morning All,

I’m almost 2 weeks post op, for a DAV Fistula on my brain, which i underwent squid embolisation.

This all began with a sudden severe headache which I assumed was a migraine, but after no improvement got checked over where they discovered it was a bleed on my brain, and further tests lead to the discovery of the fistula.

It all happened so suddenly and although I am incredibly grateful for the quick intervention and treatment, I’m left feeling mentally all over the place, and seeking some reassurance/support from anyone who has been through similar, for some guidance on recovery.

Any Advice or support will be much appreciated.

Hey OP, I'm so sorry to hear about your experience and I'm glad you received quick intervention. It sounds incredibly scary so it's no wonder you feel upset and disorientated.

I have no personal experience but have found a couple of organisations that offer online support groups/forums:

https://www.bafsupport.org/

https://www.taafonline.org/

I hope they can help you 💐

Also these:

https://www.facebook.com/share/g/1CZ8vk5C6o/?mibextid=wwXIfr

This area seems specific for DAVF:

https://avmsurvivors.org/c/types-of-avms/brain-dural-av-fistula/60

@ReallyIsThisStillGoingOn thank you so much for the response and posting these links. That’s really helpful x

You're very welcome. Good luck with your recovery 😊

Hi OP, my experience is different to yours)brain tumor rather than injury) but the seriousness of the problem and the speed around diagnosis and treatment definitely took a toll.

I'd definitely recommend trying to get some counselling, perhaps through one of the specialist charities (I was lucky and had access via work so look at that option too).

What's the prognosis for you in terms of recovery/impact? I have had to slow down A LOT, and accept a lot of changes to my life. It's slow and sometimes very upsetting. I know that "be kind to yourself" is easy to say, but you really do need to find how to do that - and ask the people around you for love and support. If you're like me, you'll be desperate to get back to normal, and the key is learning that normal still exists, it's just maybe going to look a bit different, either short- or long-term.

Hi op I always wanted to have a thread on here for support for brain injury, as I know how isolating and rare it is.
I just wanted to say you're not alone.
I had a ruptured aneurysm 6 yrs ago.

Just putting it out there.
I'll come back xxx XX hug

That sounds like such a frightening thing to go through, especially with everything happening so suddenly. It’s completely understandable to feel mentally all over the place afterwards. Give yourself time to recover and don’t feel you have to rush back to normal.

Being easy to yourself is possible by performing small steps such as caring for own self, relaxing, giving yourself time to enjoy, treating yourself with food you love and going out with people.

I rather embarrassingly knocked myself out cold in the back garden at home - cleaning the ground sheet for our tent which DH had been using for gardening. I had the worst imaginable headache but stupidly didn't get help until the next day when our GP looked at me in horror and sent me straight into A & E in the back of an ambulance. I was lucky that it was just concussion but recovery took me a good 18 months. Our hospital had a head injuries team that you could self refer to, and I saw them for the best part of 12 months. The 1st six months were incredibly tough - I had awful light sensitivity and had to wear sunglasses even indoors, my concentration was shit, and I had to wait a long time to be able to read again. I was also very tearful, anxious etc. This team were amazing, and had a combination of physios, Doctors etc. The most alarming part was not being able to walk downstairs, I had to do that on my backside which was fine at home, less so when out!

The other good charity is Headway and they run lots of local support groups.

Thank you so much for all of your responses. I’ve felt very isolated in this experience until now 💕

I think it’s been the sudden, overhaul of life and everything happening within the space of a week that’s thrown me so off course. And it’s like I’ve been plonked back into the world, feeling far from ok, and told to get on with life as normal.

I feel incredibly grateful to have had such speedy diagnosis and treatment and my experience within hospital was faultless considering the strain on the nhs.

I just feel so numb now. I’ve got 6 weeks off work, I can’t drive, I can barely take myself for a walk without feeling dizzy or sick. And I just don’t know where to begin.

I have the details of a nurology nurse who is my point of contact, but she’s very much “take it easy, and rest up, you’ll feel better soon”.

and my family have been incredibly supportive and taken over school runs etc and brought meals over and I’m so thankful, but no one truly understands what it’s like to feel this way/go through such madness within the space of a week! I just feel all over the place and not sure where to start!

@VikingNorthUtsireso sorry to hear about your tumour. It’s scary how much life can change overnight.

when did this happen to you? How did you find recovery?

im thankful to have a therapist already so will go back to seeing her weekly to work through this. But I pay privately which doesn’t help when I’m now not working for the next month or so.

im beyond desperate to get back to everyday normality, even waking up and going to my stressful job would be welcome now. I feel like I’ve taken every tiny thing for granted in life. I just want to be able to wake up, and get on with my day without the excruciating headache to start my day, and the exhaustion that feels like shouldn’t exist when I’ve done nothing all day!

I deffinately feel like I’m struggling way more mentally, I need purpose and goals to move forward. I cannot spend another day sat staring at the tv, not taking anything in 🤦🏻‍♀️

They explained to me that the brain is one of the most delicate organs in the body, and any trauma takes some time to recover from. So remove all expectations of yourself, and take it day by day taking any offers of support/help. You'll get there, it just takes time.

@Spaniels4Evayes I think I’d feel a bit more understanding if I understood more in depth about what actually happened to me. I still don’t fully understand what happened/what caused it etc, I feel very in the dark.

I think it’s the balance of rest/moving forward I’m struggling with. I need to get out of this rut of sitting around doing nothing, but find something that doesn’t put me back in hospital!