Inspired Spinal Cord Injury Support Forum

emilyoverton
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Newly Dec 18, 2018 18:20:02 GMT -8 via Inspired Mobile

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Post by emilyoverton on Dec 18, 2018 18:20:02 GMT -8

Hello everyone,
I am very newly paralysed due to a medical condition called AVM (artrovenus malformation) which I was told if found earlier I wouldn't become paralysed. I am really struggling to come to terms with everything. I dont have anyone to talk to because they are all scared of what I'm going to say.

I'm from the UK and just wondering if there was anyone will to talk to me about things

Thank you for reading

Emily Overton

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moco
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Newly Dec 19, 2018 1:54:59 GMT -8

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Post by moco on Dec 19, 2018 1:54:59 GMT -8

Hi Emily
I am from the UK - but it's my husband who has the SCI. This is a good place to be for practical help and emotional support. Someone useful will be along soon - but till then "welcome".
Giving some info on how AVM affects you (is it your lower half or all 4 limbs that are affected) and an idea of what you want to talk about will help to get a discussion going.
Meanwhile search on key words that you want info on and you will find lots of threads - there is little that hasn't been discussed on the forum at some point

tetra, vintage, and 1 more like this

tarabev
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Newly Dec 19, 2018 13:39:53 GMT -8

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Post by tarabev on Dec 19, 2018 13:39:53 GMT -8

Hi Emily, welcome to the forum, I'm sorry that circumstances have made it so that you felt that you needed to seek us out. I hadn't heard of AVM so I googled it and I assume that you have AVM of the spine and not the brain because why would you be here otherwise.
Please try and not be too frightened.

How has AVM affected your spinal cord, in that what functions have been affected and what level in your spine. Telling us things like that will give us more information for us to tell you what you can expect. Just know every spinal cord injury is different and just because someone else may have the same level of injury doesnt mean they have exactly the same issues, on a scan, 2 injuries may look very similar but one person may be able to walk and the other cannot, one person may not have sensation, but the other person does. Its why if you tell us about yourself, then we can help as much as we can.
How long ago did you get told about your AVM? Have you had surgery/radiology treatment?

vintage
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Newly Dec 19, 2018 16:29:48 GMT -8

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Post by vintage on Dec 19, 2018 16:29:48 GMT -8

emilyoverton, I’ve sent you a PM. Are you able to see it on your profile?

Mutations are associated with arteriovenous malformations.
www.ncbi.nlm.nih.gov/pubmed/29298116
Somatic Activating KRAS Mutations in Arteriovenous Malformations of the Brain.

I’d say, eliminate everything that causes tumours from your diet and environment.

www.ncbi.nlm.nih.gov/pubmed/30544177
High prevalence of KRAS/BRAF somatic mutations in brain and spinal cord arteriovenous malformations.
“...Our findings support a causative role of somatic tumour-related mutations of KRAS/BRAF in the overwhelming majority of brain and spinal arteriovenous malformations....”

www.ncbi.nlm.nih.gov/pmc/articles/PMC5075021/
Mechanisms of viral mutation

dewy
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Newly Dec 21, 2018 7:19:42 GMT -8

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Post by dewy on Dec 21, 2018 7:19:42 GMT -8

Dec 18, 2018 18:20:02 GMT -8 emilyoverton said:

Hello everyone,
I am very newly paralysed due to a medical condition called AVM (artrovenus malformation) which I was told if found earlier I wouldn't become paralysed. I am really struggling to come to terms with everything. I dont have anyone to talk to because they are all scared of what I'm going to say.

I'm from the UK and just wondering if there was anyone will to talk to me about things

Thank you for reading

Emily Overton

Welcome to the site, it's a terrible and devastating disease you have. You can PM me or public post either one and talk about anything you want.

Immortally Insane

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Post by emilyoverton on Dec 18, 2018 18:20:02 GMT -8

Post by moco on Dec 19, 2018 1:54:59 GMT -8

Post by tarabev on Dec 19, 2018 13:39:53 GMT -8

Post by vintage on Dec 19, 2018 16:29:48 GMT -8

Post by dewy on Dec 21, 2018 7:19:42 GMT -8

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