newbie with potential AVM

[Catmum_22]

I hope I’m in the right place, forgive me if not. For the last 10 weeks I’ve had lots of unusual symptoms - dizziness, a swirling, pulsing sensation in my head, impaired vision at times, loud unusual tinnitus in the left ear and some odd left sided body sensations. I had an mri to try and find the cause and the gp told me I have an AVM present on the scan. She didn’t have access to the images and I’ve been referred to the neurologist.

Does anyone else have any experience of this? I’m so scared and I don’t know what’s going to happen next. Before this I was a healthy 32 year old wife with children just going about my normal daily activities. It’s really affected my mental health and all this waiting around while dealing with these symptoms has been such a drain on me.

[cat3]

Brain issues are scary for most of us Catmum. I guess I was 'luckier' then many as I only learned of mine (brain haemorrhage) after the event and the subsequent treatment to fix it. But it spooked me once I knew why I'd been hospitalised and it took a while to adjust to the fact.

But I was massively reassured at my follow-up 6 months later by my wonderful neurosurgeon. He showed me before & after scans to prove how the weakness in the damaged blood vessel was firmly fixed and, unlike most people, I'd had my brain checked over by experts.

There's no way around the fear I guess. I can only tell you of the many folk here who've had surgery for AVM and how they've survived to tell the tale. The Headway helpline can offer support and clarity on what to expect in the many different types of brain issue. If you call them on 0808 800 2244 (9-5 weekdays) they can be reassuring during the anxious pre-treatment period.

Please stay in touch m'love, and do contact the helpline. Headway can help alleviate some of the stress and folk here help one another to feel less alone.... Cat x

[Catmum_22 in reply to cat3]

Cat, thank you for your reply. I’ll definitely make contact with the helpline, thank you for pointing in me in that direction. It’s such an uncertain time but I know how lucky I’ve been up to now to not have had an emergency event and long may that continue until I get this treated. It’s times like these you never think it’ll be you having to talk to a neurosurgeon and talk about issues with the brain, it always happens on the telly etc… it’s more the shock of everything bubbling to the surface plus all the unknowns. Thanks again, Cat!

[cat3 in reply to Catmum_22]

It's hard, I know, to block dark thoughts when we're facing a health crisis. My main experience of 'Holding it together' was after a diagnosis of breast cancer ; sitting in my car outside the clinic absolutely stunned, with dreadful scenarios racing through my head.

I guess strength comes from trusting in the amazing technology and the surgeons who have the skill, the will and the expertise to fix us. I recall a few weeks after my op crying with laughter at a silly joke from a radiotherapist and feeling safe and cherished amongst clever, caring staff.

Then 4 years later (after my SAH) when my neurosurgeon described the joy of his handiwork and seeing each patient walking, talking and living their lives, kind of sealed the deal for me, trust-wise.

The initial shock is devastating isn't it Catmum. But I'm here with you for the ride ; do stay in touch.....Xx

[lcd8]

Hi Catmum. So sorry that I've only just seen your post. I too have an AVM!! They are rare though so I'll be surprised if you find too many people that know about them. I'm 49 and found out about my AVM when I was in my mid-twenties too. I had actually known there was some kind of a problem since I was 14 though and was hospitalised due to a secondary complication. Fortunately my AVM doesn't give me too many daily issues. But I know that some people suffer a lot worse with them. If I can help in any way just let me know.

Lulu

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