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  • Right thalamic AVM

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    Old 12-16-2013, 09:46 PM   #1
    Davidd86
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    Question Right thalamic AVM

    Hi I'm new to this site thought i would join to find more information on my condition as Doctors and Surgeons seam to be limited to what they tell me. I have a Right Thalamic AVM that to my knowledge is roughly 6-7 cm. the artery in conection with this AVM presses against my optical nerve causing me to have pix-elated vision. i have had nausea since i can remember and the same with the constant dull pain in my head, painkillers ease the dull pain but it actually makes me feel out of sorts cos i'm used to the pain. I'm 27 now and found out about this condition two years ago where i went temporary blind,was vomiting and passing out. ambulance arrived, because i was concious they were refusing to take me to hospital if it wasnt for the fact that i phoned nhs24 then the doctor would not have arrived and suggested taking me to hospital. when i arrived at hospital they done there usual check, Blood pressure, heart rate and eye check but when the staff nurse checked my left eye i could tell straight away something wasn't right plus the fact she said "thats not right" then marched away for a second opinion, where the second nurse came had a look said hmm.. then both walked away. I'm not that articulate when it comes to medical terminology but i don't think "thats not right" and "hmm.." are in the book lol. anyway i went through a series of tests to find the exact problem wich turned out to be my avm. The neurosurgeon that was dealing with my case told me he is only willing to opperate as a last resort. to me meaning he cant do it, or it is too much of a risk. he will refer me to another specialist that deals with radio therapy (gammer knife) for me to arrive in Sheffield and be greeted by a doctor saying "i dont understand why you've come all this way, i could have just spoke to you over the phone". he couldnt give me any facts of figures ether, in terms of risk ie. loss of sight,mobility,death i have never been given figures. I'm trying to fit a life story into as little words a possible here, my point is i've no facts or figures to work with. all i know is i fell ill went to hospital got told what was wrong here's a letter see you later. i got no clear cut answer i didn't even get "we dont know the answer" all i got was here's what's wrong see you later. obviously news like this would have a great impact on anyone's life but no counselling was offered and there are no support groups funded for my area. Headway-Ayrshire done some voluntary work with me to help but could only do so much as they had no funding. I feel i have been let down by the health system, just forgotten about until the next problem arises most likely will be a haemorrhage but thats not to say its going to happen. this still doesnt change the fact that all i know of my condition is what i have read over these past two years and i dont have any health options as they don't seem to have a clue. Anyone out there got any idea, please dont suggest talk to my GP as the last time i tried that i was the educator.

    The world is my oyster....

    David.

     
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    arteriovenous malformation, avm



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