Post 8 months avm bleed and 6 month radiation treatment

Welcome & Help New Member Introductions
1

My avm bleed about 8 months ago, as a 17 year old during school. I had a sudden onset of a headache and persisted with the pain for 2 days. The first time I went to emergency I got sent home. I went the second time and after a cat scan they took me in for emergency brain surgery to relieve the pressure inside my head. I was in hospital for 2 weeks, and since then had 1 round of gamma knife radiation treatment about 6 months ago.

Since then, there hasn’t been a day that I haven’t thought about my brain bleeding again. I am very anxious and stressed about knowing I have to possible live with the fact my brain might bleed at any point. I am at uni and that hasn’t helped with distracting me away from my anxious thoughts.

Does anyone know how to cope with the fear of your brain bleeding again/ having another brain avm bleed. I don’t know how I can continue being stressed about this fear every hour of every day.

As an avm bleed is very rare, I don’t have anybody in person to talk to about their experience as I am yet to meet someone with an avm that has bleed

2 Likes
2

First of all, welcome! The common theme in welcomes is that its great you found us, too bad you had reason to! So, we have a few similarities for sure. I had a bleed, and ended up in the hospital for 5 days. I didn’t need a drain but was on steroids for a while, the drain was on the table for sure. The steroids did their thing and then after w hole lot of tests and waiting I had gamma knife 6 months to the day after admission for the bleed.

I understand the fear of the second bleed. I thought about it all the time between bleed and gamma and then after gamma. As time passed I knew that the radiation was doing its job, and was able to start compartmentalizing it a little better and rationalizing that every day my risk reduced. You’re at the point where it really starts doing its “thing”. I had a little swelling around 6 months, and some ice pick head aches. Scared the daylights out of me, like every time something felt different. Time was my friend, it slowly allowed me to rationalize it like I said. Take Care, John.

3 Likes
3

Hi Chloe, Welcome to Ben’s. Unfortunately you will find an abundance of experience here in dealing with fear. I can guarantee you’ll grow in wisdom and kindness due to your ordeal. It will make you a better person. I went through a very similar thing to you at age 14-- brain bleed and two craniotomies and a long time in the hospital.
You may need to take a semester off. Believe me, that is no tragedy.
I hate meds, probably because I’ve been on some very bad ones on and off for 49 years for seizures.
I just researched kava kava. You should check it out. There’ve been real medical studies and it may help you both emotionally and physically without any negative risks. Be well, Greg

1 Like
4

Hey Chloe,
Your fear is normal, that is, it was the same for me. Initially I had no idea what was happening, I’d collapsed and it all sort of happened around me, Post surgery…OMG…it was like walking on eggshells, just waiting for the next one to break. I was very fragile post surgery, any thing outside of ‘normal’ and I’d be symptomtaic. Light, noise, touch… every sense was on hyper-sensitivity, so I had to be very mindful and moderate/regulate everything. It was exhausting, beyond exhausting

Over time (and I mean years) my symptoms have reduced. I still have ‘good days, bad days and those days you wouldn’t wish on your worst enemy’ but the space between them has expanded. I thinks it’s completely normal to be more aware of symptoms, to be more aware of your surroundings and be more aware of your body. All of my body’s ‘normals’ had changed, my tolerances had changed, so I had to learn all of my body’s signs again. Relearn what is normal and what is oddball.

I have had those oddball symptoms, turned up at the hospital, only for them to send me home, but by the same accord I’ve turned up at hospital and they’ve decided I needed to be kept in. There really is no rule or key sign that there’s an issue, everybody’s signs are very individual. Some people say ‘when I get a bad headache, I go to hospital’ if I went to hospital every time I got a bad headache, I’d need to set up residence in A&E :rofl: For me I look for a progression of symptoms. Like I say ‘A headache? that’s normal’ but if that headache progresses to tingles in my hands and feet and then nausea, that’s a bit more concerning. If that progresses to actual vomiting… …I need a Dr. These are my signs, and you too will learn your signs.

I must also agree with Greg

As I tell everybody 'Take the time your body needs and not just the time your mind thinks '.
Recovery from neurosurgery takes time and the more time you take the better the long term outcome.

Well, yes, now you do. Us. We know because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

1 Like
5

Hi @chloe1 it’s good you found us and I hope we can help you along the way.

I discovered my AVM before it bled (it hasn’t so far) but I had to wait about a year from first discovering it to having an embolisation to glue it up. I have to say I worried about it bleeding all through that time (and for a year or so afterwards, if I’m honest). Two of the things I did to try to relieve the pressure on me were:

  • I was told to avoid things like coffee, chocolate, caffeine, alcohol, smoking – basically anything that spikes your blood pressure. This is a small thing you can do to look after yourself nicely and reduce the risk.

  • I bought myself a medical wristband. The one I found was a silicone band that could be engraved with my name, hospital details, condition, my wife’s phone number and a straightforward instruction that “in case of stroke dial 000*”. I also put similar details in the medical section of my mobile phone.

The key thing about the wristband was that if I was found examining the ground at close quarters while I was out and about with just members of the public, I reasoned that I might get dealt with more quickly – my records found more promptly – and do better if I did have a stroke. I have to say it definitely helped me to relax a bit.

As my condition changed – as we learnt more or I’d had my operation – I got a new wristband with the new details. They were perfectly affordable and perfectly comfortable to wear 24×7, too.

The other thing I did was to talk openly with my friends (work colleagues) about what stroke looks like, again with the point of view that they would help me if they found me inspecting the carpet suddenly. I think it is the right thing to do to talk to those around you. There’s nothing to be shy or reticent about: it could save your life and one day might save theirs, too.

When I had my AVM going a bit rampant in the back of my head, it was making me dizzy (and I wasn’t allowed to drive) to the extent that my boss preferred me to work from home. But I persuaded them that I was much safer at work with people around me all day than being left alone at home for 8 hours or more at a time. They understood and I caught the bus or got a lift from friends to get to and from work through my ordeal.

I hope these thoughts might help.

Very best wishes,

Richard

.* or 911, 999 or 112 etc, according to country.

1 Like
6

Hello Chloe

I never had any warning so my bleed was very sudden. 1 day I was fine, the next I was in intensive care. I was 19.
I’m sure you’ll get frustrated and unfortunately find many people can’t comprehend your situation because you’re not in hospital now.
Try and pace your life but don’t stop doing everything. You’ve got to enjoy yourself because no one knows what is going to happen to you next.
Are you in UK?

Good luck
Tim

1 Like
7

Thank you John for your response.
Your words make me feel like what I’m feeling is normal and that there are people out there that understands! Hopefully over time I will start to feel better

8

Thank you Greg- I think your right as I am definitely considering taking next semester off

9

thank you, your message makes me a bit more at ease here and it is much appreciated.
Me too have also been at hospital 3 times in the past 6 months- scared that it was another re bleed but really it was an infection.
I really hope the space between my bad days starts to expand :joy: I seem to be having them too often

10

Wow- thank you for sharing this.

I have never thought about a wristband like the one u are describing, but I think that is a great idea. It may help to put my mind at ease

Also I agree with you, I have been trying to reduce consumption of things that lower my blood pressure like alcohol and high intensity exercise, but I still drink coffee. I don’t know how much of a risk coffee imposes but I try to stay hydrated when drinking it and only drink 2 shots per day.

11

It’s the caffeine you’re as well to avoid. It spikes your blood pressure. I switched to decaffeinated and I’ve never gone back.

These are just small steps you can take while you wait for the gamma knife to do its work.