Hi,new to site and I'm in Newquay

Hi everyone, my name is Jo and I had an avm in my cerebellum back in October 2015. This was treated with Stereotactic Radio January 2017 which I had no side effects from. I don't think it was all caught as I have experienced another bleed June 2017 this has taken my walking away and I now have double vision and see distorted images. It's very frustrating...I think it is slowly correcting itself as my vision is very slowly becoming more normal and I am re learning to walk... I just would love my head to sort itself out as it still feels un fixed. Has anyone else been in this situation? Or had a bleed in the cerebellum? It's taking its time to fix and I'm slowly getting worn down by he walls around me....

19 Replies

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  • Hi I haven't had an avm but I've had a carotid dissection and ischemic stroke.

  • Thank you for talking to me, my avm resulted in a stroke but I think it must be mild as I have not lost anything or become disabled looking in any way.. I'm hoping the body corrects itself and this situation is a massive learning experience ....

  • You are lucky then.

    I don't know about the body corrects but sometimes the genes go wrong. Yet we have to move forward from the pieces.

  • This is true, I am now walking on crutches so I do feel I'm moving forward with my recovery...

  • My vision is still a bit wobbly but it's better than it was. There were droplets in my vision.

  • That's interesting... no one knows what's wrong with mine

    Which only tells me it is brain related...the vision and behind the eyes is in perfect condition! So I'm told... I do hope they correct themselves 😀

  • Mine is from the stroke/brain. I had 20/20 vision before 🙄

  • Welcome Jo. Can I ask whether your AVM in 2015 ruptured ? I'm asking as it's usually the bleed which causes damage, which would explain why you're now having after effects but didn't 2 years ago. Cat x

  • Yeah it did, was only small though I think.

  • The effects of a bleed can be lifelong, but life does get easier with time, patience and practice.

    And at the 4 month point, your brain has a long way to go in terms of readjustment. The wait can be frustrating but the brain, with all its complexities, is slow to heal.

    Time really is the brain's biggest healer !

    Take care, Cat x

  • Hello Cat. I had an Avm in 2015. A small one they said. It was in C1 where spine/cord meets brain. It was a vein and artery fused together which bled. They operated to fix it cos' if it had ruptured things would have been very different for me. I am 2 years down the line and even though so much better the mental fatigue is really frustrating and debiltating. I feel that you can fix physical ailments but you cant 'make' your brain get better as fast as you would like. Hang in there and be kind to yourself.

  • Yes, those two words we're advised to put into practice ........... 'Acceptance' & 'Patience' don't come easy when applied to daily life !

    But I'll be at the 6 year point in Dec. so had more time to practice. It gets easier further along the learning curve ! 😉 x

  • I had a avm on my cellerbella which caused two anurisms for n my frontal lobe which caused a bleed I had Emer surgery I had coiling my vision was double really bad it took 8 months and still isn't right I had open brain surgery to remove the avm it's mad as before this never heard of it in my life hard to talk to people aboat as they have a clue aboat it if u ever want to talk u can ring me 07555602979

  • Hi CornishWaves. I think we might have spoken before. I also have a Cerebellar AVM but mine is untreated as yet. I have known about it since I was in my mid-20s but I I was advised it was a large lesion and that the best option was to live with it. Although that was/has been difficult to accept at times I have done as suggested. I could have Gamma Knife but Sheffield won't touch me unless I have at least 3 embolisations first. Truth be told all this scares the hell out of me. And with only a small chance of 'curing' me I have not been prepared to take the risk. My understanding is that an AVM can bleed even if only a tiny bit of it is left. I'm really sorry to hear this has happened to you.

  • I think we have too. It's beyond frustrating and everyday is becoming the same. I'm pretty scared for the official outcome. I'm hoping it all corrects itself... I've bn keeping positive throughout it all but the smile is starting to wear thin! The treatment is not guaranteed as I have learnt so I'm not 100%

    sure I would say have it.. your decision though, you do what you think is best. All the best to you x

  • Thanks

    Lulu

  • Hi Jo.

    I had stereotactic radiotherapy about 20 yrs ago.

    3 haemorrhages of the brain stem

    Ive also had an aneurysm on the cerelellum that was leaking and threatening to burst so it was injected with glue to block it and give the effects of a stroke. That was 4 yrs ago

  • hi in a way it was quite comforting knowing that others have cerebral AVM just like me.....mine has the official title of cavernous cerebral haemangioma but i think its the same thing....i've done nothing with my condition and to be honest i'm in a bit of a mess health wise . i'm left with living with a time bomb that i have no real control over.i just have to accept that this is me now and keep going ...accepting your limitations while finding the silver lining to life is the key.

  • Hi, my avm is in the cerebellum part of the brain, it's beyond frustrating having it bleed. I had treatment in January ( stereotactic radio) but it still managed to bleed, I am told it is rare for this to happen, so I'm just unlucky . I wish you all the luck with your decision be it treatment or not, I have read that lots of people go without any treatment and are fine.. it's hard to give advice as everyone is individual and unique. And we all recover/repair different. Good luck Jo

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