My Brain AVM Story - Sheffield, UK

General
,
1

Hi all, I wanted to give back to this community group as this is something that really helped me get through my AVM and treatment. Hopefully, the below helps at least one person going through the same as I did.

How I found out about my brain AVM:
I was 22 years old when I found it I had an AVM and found out quite a brutal way… I was doing some work on my laptop when I heard a sudden loud sound in my head and then almost a “pop”. I then suddenly lost feeling in my right hand completely, at first I thought this was carpal tunnel or something not as sinister, I went to A&E where I had head scans reviling it was a bleed on the brain.

After 5 days in the hospital, they did multiple CT scans and MRIs and Blood tests and couldn’t find a reason why it happened I was then sent home after a few days due to the bleed regressing and worked on physio with my hand. I had multiple meetings with my neurologist and they couldn’t understand why I had this bleed. especially with all my tests coming back perfect

My neurologist at my hospital was brilliant and referred me to Sheffield for an angiogram. After that angiogram was finished, the doctor who operated said it initially looks look there was nothing there! So I walked out and got on with my life puzzled. I then received a letter around a month after saying something was found the in images from the Angiogram and it was a tiny AVM (they described this as small but aggressive) with a 2% chance per year of it going off.

My bleed left me with really bad fatigue and sickness that was the biggest battle I faced after quite a few months I think I have finally shaken this off, my hand managed to get back to normal maybe 95%. the only other problem it’s left me with is my vision it’s gone quite grainy since the doctors describe this as “visual snow”.

Having my Treatment
I went to Sheffield after a couple of months waiting for my Gamma Knife treatment. To start with you have had the metal frame put on your head. This is probably the worst part of the day and most painful just think you’re in the best hands and once you get past that it’s almost plain sailing! At first, my head and jaw felt so tight and horrible but this went away for me after a few minutes.

After this, I then had a 30-minute MRI, not the most enjoyable if you suffer from claustrophobia, my advice would be to ask for some music to be played or a podcast it’s their job to make sure you’re comfortable. Also, just to note you have someone who is with you at each stage comforting you this really helped me.

The final part was having the angiogram this was much quicker than the first time as in my case they were only exploring the area where the AVM was. Another quite uncomfortable experience but a quick one.

I then went to a waiting room where I relaxed for a few hours so they could keep checking on me, at this point I felt awful, I had a horrible headache and flashing lights in my eyes, this soon passed and was probably likely due to the long hours with my head frame

After my treatment
I suffered fatigue and quite bad headaches in the first few weeks but after that, I haven’t had many problems there’s some anxiety there that there’s still a ticking timebomb in my head but other than that I feel really lucky.

Lessons I learnt / Advice for anyone going through something similar
I understand all cases are different some more severe than others but I just wanted to share some advice that helped me through the bad times

  • It Does Get Better: for weeks I beat myself up about losing movement in my hand, at the time it feels like you’ll never be able to do what I used to do, but if I keep at it listen to the doctors and physios there is light at the end of the tunnel!
  • Keep Your Mind Busy: I sat alone and spent so much time worrying about the “what if’s”. Being around the people I love and enjoy spending time with as much as I can, and doing things that I love from watching a movie to playing a game really helped. Just keep your mind away from anxious thoughts as much as you can as they don’t help you.
  • Your Life is Not Over: This is something I struggled with thinking my career would be over and I can’t get back to my old life. You can, I did in time and stuff I couldn’t do I explored and found new interests. The best thing I got told was to think of what happened as a tiny blip it would be a small paragraph in the book of your life
  • Dont worry about things that haven’t happened yet: This is something I found most useful, although there’s a small chance I could have another bleed until my AVM is gone, they said this could be 1 year, 2 or even 4 but a very small percentage of this happening. My point is to try live in the moment don’t focus on the what ifs as you will certainly look back and regret it.

I do hope I haven’t come across as insensitive as I wanted to share from my perspective, feel free to give me a message if you just want to talk or ask any questions

5 Likes
2

You come across perfectly. And reading it, for me, makes me want to park your story somewhere for people of the same age to find. We all have similar worries but, depending on how old or young we are, we have some different worries as well and I feel you’ve told the story of a 20-something perfectly.

The flashing lights post angiogram may well have been due to the contrast material. I had scotomas on occasion for several weeks after my embolisation and angiogram and someone I chatted with here suggested it was likely the contrast material. So when you have a further angiogram, don’t be surprised if you get the same again.

I completely agree with your “keep your mind busy” approach. I found it one of my tactics for at least having less time to think about the scary stuff.

I think you’ve done wonderfully and it’s very good to know that, even if you hadn’t signed up, sharing some of the things we do on here helped you.

Very good to meet you. Welcome!

Richard

2 Likes
3

Went to the same hospital a number of years ago for the same surgery and can totally relate to what you are saying
20 years on and still going strong but had to adapt significantly. Still have to deal with it day to day but making the most of everything.

1 Like
5

Thanks Richard great to hear from you hope you’re well

6

Thank you mate hope you’re doing well

7

I’m 5+ years post embolisation and I’m absolutely fine.

How are you doing now? Simply having the operation in the past sometimes isn’t enough. Getting over it and feeling largely back to normal takes quite a long time.

8

Amazing to hear! Yeah all good, maybe rushed to quickly back into normal life with starting a new job just 2 weeks before my surgery. But life is generally going great

The only problem I have is some small battles with anxiety and questions in my head, such as does covid cause an increase in ruptures and what if I do have another rupture or what if the radiotherapy could cause a brain tumour. To some it may sound silly but I’m hoping to ask all my worries to a neurologist in my post check up when it happens

1 Like
9

There is always an increased risk of things like tumors with having radiotherapy and examinations that use x-rays but the balance of that is that we are choosing to have an intervention now that prolongs our life, or quality of life, much longer than it would be if we went without treatment. There’s no perfect answer to any kind of surgery.

When it comes to having procedures like this, it probably matters most how many such things you need over your lifetime rather than worrying about one event. If you need several examinations (likely for different causes over time) the risk will increase. Sometimes, there is a choice to be made between having an examination using something like an MRI rather than x-rays but more often there isn’t really a choice to be had and each time you’re choosing in a similar way as you have had to recently: a short term need traded against a possible longer term risk.

If it is causing you stress, think about it like crossing the road: that’s a dangerous thing to do but it doesn’t stop us from doing it every day. We minimise how much we need to do it, by sticking to the pavement or reduce the risk by crossing at controlled crossings but it is a reality of life that you have to do. Otherwise, life is just far too limited.

Hope something here might help.

Richard

10

Thanks a perfect summary, couldn’t have said it any better thank you mate

1 Like