So I have an AVM in my brain

Fed up talking videogames? Why?
User avatar
BSA
Member
Joined in 2008

PostSo I have an AVM in my brain
by BSA » Thu Oct 25, 2012 4:27 pm

So here goes;

In the beginning of March of this year I woke up at a friends house at uni after a night of games and few drinks. We talked for a bit and then I noticed that my right arm had gone completely numb, and for some strange reason this didn't bother me. I remember rolling from side to side saying "I don't feel very well", I was fairly out of it at this point. I vaguely remember my friend calling an ambulance and then vomiting inhumane amounts all over his room.

There are a few memories here and there but the first time I clearly remember anything is when I woke up 3 days after. I was in such horrendous pain at first so I didn't really pay attention to what doctors were telling me but I now know they were telling me that; 1) I have an AVM in the centre of my brain 2) It's level 5 out of 5 which means it's huge and diffuse 3) it's inoperable. If you're like I was, you've probably never heard of an AVM so here's the gist. It's an arteriovenous malformation; a tangle of blood vessels which forms at birth where arteries connect straight to veins instead of having the normal bed of capillaries between them to lower pressure. This means that high pressure blood comes out of the arteries and straight into weak-walled veins, and over time of battering a particular section of the vein haemorrhages and blood pours out. Mine is in my brain and what I found out is that blood suffocates brain cells with too much oxygen thus killing them, which is basically it's not good. Infos here http://en.wikipedia.org/wiki/Arteriovenous_malformation

The doctors said that it was inoperable for a long time which eventually became terrifying. This thing could bleed and kill me at any time without any kind of warning. After an initial bleed there is a 10% chance of it bleeding a second time in the first year and then 2-4% for every year after that which accumulates so eventually there is a 100% chance of it happening. When there is a second bleed there is a 50% chance of death and a 20% of a major disability and frankly any percentage of it happening is too high. I'm also very aware of it being there and the knowledge that it could end you at any moment is just hideous.

Then I got some good news, a centre at Sheffield offered me gamma-knife which is a non-invasive way of sealing up the veins so no blood can go through them any more, resolving the problem. The downside is that it's not a sure thing due to the size of mine and it takes 5 years to seal up so there's still a chance of another haemorrhage. Overall it is wonderful stuff that they can fix it, but my lord I'm still a mess over the whole thing, it's only really just begun to hit me and with the problems that stroke has left me with, the incredibly low chances of all this happening and the fact it could happen again whenever, I'm ever so slightly annoyed.

Basically, I'm suffering enormously over this, and I was wondering if anyone knows anyone that has one? Ever heard of one or dealt with an AVM before?



tl;dr version; I had a brain haemorrhage due to an AVM in my brain, anyone know anything about it or know anyone with one.

Image
User avatar
Floex
Member
Joined in 2008
Contact:

PostRe: So I have an AVM in my brain
by Floex » Thu Oct 25, 2012 4:30 pm

Dude :( Sorry to hear. Can't say I have had any dealings with this but all the best going forward

Something Fishy

PostRe: So I have an AVM in my brain
by Something Fishy » Thu Oct 25, 2012 4:36 pm

I'm also sorry to hear it. No experience of anything like that here either. A good friend had an anuerysm that made her very poorly but this sounds really different.

Really hope they can sort you out.

User avatar
$ilva $hadow
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by $ilva $hadow » Thu Oct 25, 2012 4:40 pm

Sorry to hear :( I strolled into this thread expecting the usual 'jolly ho' but its not.

What else can you do but live your life to the best that you can? Take pleasure from the simple things in life? Do some things you always wanted to do, and maybe start saving some cash to help out family if you're truly a goner?

There's no comfort in knowing your death may be coming, so you may as well give up worrying. That's a pretty difficult mental state to get into, but worrying all the time can only be taking a toll on your mental health.

User avatar
Rubix
Member
Joined in 2008
Location: Bristol
Contact:

PostRe: So I have an AVM in my brain
by Rubix » Thu Oct 25, 2012 4:42 pm

Same here I didn;t know what to expect when coming into this thread. Hate bad news for anyone :(

Playing: Resi 7 (PS4), FFXII (PS4)
Watching: Buffy S7, Stranger Things S2
Reading: Above Head Height
The RPG Thread | Top Gear | Star Wars
User avatar
Dig Dug
Member
Joined in 2011

PostRe: So I have an AVM in my brain
by Dig Dug » Thu Oct 25, 2012 4:44 pm

Don't know what to say other than I hope you recover because the idea of your brain having problems is just the worst.

User avatar
Turboman
Member
Joined in 2011

PostRe: So I have an AVM in my brain
by Turboman » Thu Oct 25, 2012 4:47 pm

Really sorry to hear that mate. Great news about the gamma knife though. I know a little about them, but haven't had any experience of people with them.
Hope everything goes well with it, when does the treatment start?

Errkal wrote:It is amasing how people dont seem to be abel to do that.
Fizheuer Zieheuer
Member ♥
Joined in 2008

PostRe: So I have an AVM in my brain
by Fizheuer Zieheuer » Thu Oct 25, 2012 4:49 pm

Total bummer dude :<

HUG

User avatar
still
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by still » Thu Oct 25, 2012 5:04 pm

B_S_A - that's obviously a terrible thing to have to live with.

Hopefully you can find someone else to talk to who is affected by this also or who knows someone who has been through this. A problem shared is a..... (and don't say doubled !!).

This gamma knive sounds very promising - the wonders of modern technology ! - so let's hope this works out for you. Have you got any idea as to when you may start this treatment ?

I sincerely hope you can find some way of coming to terms with this. Have you been offered any form of counselling to help ?

My very best wishes to you - it's a very bad hand you've been dealt there but you never know what's around the corner. Let us all believe that it will be some good news for you.

User avatar
Cal
Member
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by Cal » Thu Oct 25, 2012 5:08 pm

B_S_A wrote:...it's only really just begun to hit me and with the problems that stroke has left me with, the incredibly low chances of all this happening and the fact it could happen again whenever, I'm ever so slightly annoyed.


Certainly puts my ongoing tinnitus (three years and counting) into sensible perspective. :shifty:

I know nothing about this condition, so I can't really offer any useful advice accept to say perhaps the first step, when one suffers a life-changing experience is to try and accommodate it; reconcile yourself to this 'new normal' and you will worry about it a lot less. Good news about the possible treatment, and I can sympathise as to how worrying the thought of surgery must be. Try to be brave, fella.

But I'm sorry I can't really be very helpful here. I dread the day I have to cope with anything more menacing than hemorrhoids or tinnitus. :fp:

Image
User avatar
Somebody Else's Problem
Member ♥
Joined in 2008
Location: Wherever you want me to be, baby

PostRe: So I have an AVM in my brain
by Somebody Else's Problem » Thu Oct 25, 2012 5:15 pm

Really sorry to hear that, dude. The Gamma Knife thing is a positive step, anyway!

ImageImage
User avatar
Squinty
Member
Joined in 2009
Location: Norn Oirland

PostRe: So I have an AVM in my brain
by Squinty » Thu Oct 25, 2012 5:18 pm

All the best dude. Very sorry to hear about this, and I hope the procedure goes well.

User avatar
PaperMacheMario
Member
Joined in 2011
AKA: The Traitor

PostRe: So I have an AVM in my brain
by PaperMacheMario » Thu Oct 25, 2012 5:43 pm

Jesus man, that's horribly unlucky. Hope they can sort this out. All the best.

HSH28 wrote:Sounds what you really need is a sense of humour.
User avatar
DML
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by DML » Thu Oct 25, 2012 5:50 pm

Just be positive dude, we're all behind you. Sometimes life deals you a poor hand, but nothing can overwhelm the greater power of people, and the fact that this gamma-knife surgery exists must surely be a great help. Its just a defect, and it doesn't stop you being you - don't let it have the satisfaction.

Sending love from all the family.

Image
User avatar
BSA
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by BSA » Thu Oct 25, 2012 5:56 pm

Thanks for the love, helps a lot.

$ilva $hadow wrote:Sorry to hear :( I strolled into this thread expecting the usual 'jolly ho' but its not.

What else can you do but live your life to the best that you can? Take pleasure from the simple things in life? Do some things you always wanted to do, and maybe start saving some cash to help out family if you're truly a goner?

There's no comfort in knowing your death may be coming, so you may as well give up worrying. That's a pretty difficult mental state to get into, but worrying all the time can only be taking a toll on your mental health.

Disliking "goner" :( They're confident the treatment will work, it's just not a dead cert. It's those five years it takes to seal up that's doing my head in (scuse the pun) and just generally the whole situation is shite. I meant to say that I've already had the treatment, sorry. They won't be able to tell me if it's working or not for a few years though. I'm seeing a therapist now, they seemed shocked that I hadn't seen anyone sooner, but I'm happy that I'm not ignoring it any more.

That's a shame no-one knows anything, but all should be fine in the end, just need to go through the necessary stages I suppose :)

Image
User avatar
BID0
Member
Joined in 2008
Location: Essex

PostRe: So I have an AVM in my brain
by BID0 » Thu Oct 25, 2012 5:58 pm

strawberry float :( your story makes my crappy week seem like nothing. The option for radiosurgery is a good step though. Do you have a rough date for when you might get the operation?

All the best for you and your family.

EDIT: Read your last post. It's good that you've had the operation already and it wasn't left any longer. Thankfully Doctors don't like to say you're going to be okay for definite, just in case it comes back on them (I know for my minor operation they made it sound like there was hardly any point even having it) so the fact that they're confident the treatment will work is a good sign.

Last edited by BID0 on Thu Oct 25, 2012 6:01 pm, edited 2 times in total.
User avatar
Zellery
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by Zellery » Thu Oct 25, 2012 6:00 pm

Very sad to read this. I hope everything goes well for you in the future.

User avatar
Harry Bizzle
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by Harry Bizzle » Thu Oct 25, 2012 6:05 pm

Can they not do endovascular embolization?


Requires a very good interventional radiologist but I thought it was possible. Never heard of the classification system though, so don't know where you stand with it.

instagram: @habiz
User avatar
BSA
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by BSA » Thu Oct 25, 2012 6:14 pm

Harry Bizzle wrote:Can they not do endovascular embolization?


Requires a very good interventional radiologist but I thought it was possible. Never heard of the classification system though, so don't know where you stand with it.

Surgery or embolization is out the window. My AVM is partly in my parietal lobe, partly in my corpus callosum, and the rest is in my cerebellum. That and the fact that my AVM is connected with 4 draining veins make embolization difficult without doing a lot of harm to the rest of the brain.

Image
User avatar
Harry Bizzle
Member
Joined in 2008

PostRe: So I have an AVM in my brain
by Harry Bizzle » Thu Oct 25, 2012 6:21 pm

Gamma knife it is then, by the sound of things.


I suppose they're following your blood pressure quite closely?

instagram: @habiz

Return to “Stuff”

Who is online

Users browsing this forum: Alvin Flummux, Cuttooth, Denster, Errkal, JediDragon05, Jenuall, KjGarly, Oblomov Boblomov, Qikz, Return_of_the_STAR, Rich, Snowcannon, Ste, Xeno, Yoshimi and 69 guests