Hi, I’m 35 year old woman from the UK. It’s great being in here and seeing everyone’s stories and the support that’s offered here, thank you.
My story began about 10 years ago I was having a lot of balance problems, dizziness, whole body muscle weakness/numbness (making it hard for me to walk even a step sometimes) visual disturbances and fainting spells.
My doctor at the time seemed to think this sounded like I had suffered a “brain bleed” and I was sent for an MRI, where they found an AVM (I ended up having three MRI scans within the next few months while they confirmed that I had an AVM in my brain, but it did not look as though it had bled, luckily).
During this time my doctor diagnosed me with Chronic Fatigue syndrome.
However, he offered me no explanation about what having an AVM meant for me, any next steps or even what an AVM was (I had to look it up online to find out what the name stood for!).
He never offered to send me to a specialist regarding my AVM. But because I was worried and very much seeking some explanation, I did insist that I really would like to talk to someone about it, please.
He referred me to a specialist appointment, but unknown to me at the time, instead of listing the symptoms I had explained to him, such as vision problems, balance problems and muscle weakness, he had simply put “patient is displaying Chronic Fatigue Symptoms” and he had made it an “emergency appointment”.
I waited 7 months for the appointment but just before I was due to go, I received a letter telling me that the referral had been cancelled because chronic fatigue is not a symptom of a brain AVM and if I am not experiencing symptoms my AVM has probably been present since birth and therefore not a problem.
I regret to say I actually just left it there, despite still feeling very worried about it, if for no other reason than I have never had a proper conversation with a doctor about it or any explanation, so I still felt very in the dark.
When I was shown my MRI by the ladies who did my scans they commented on it being quite large (it looked almost like a large tree root in the back right of my brain, spanning across about a quarter of my brain) and expressed they would probably be seeing a lot of me as others they have had come in for check ups on them regularly.
I have just been very confused about this since then. I just thought “well, nobody is acting like it’s an issue, I’m sure it’s fine”. But occasionally I do still worry.
Is this experience normal? Can some people just have an AVM that is (as the letter described it) not a problem because it’s been there since birth?
I have just made a doctors appointment with a new doctor to try and ask if I please be seen by a specialist, and reaffirm my symptoms are NOT just fatigue. I hope it works out because I would simply just like to have mine explained to me, and know exactly what I’m dealing with