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AVM Survivors Network

Moving forward after seizure


#1

Hi All,
After a tonic clonic seizure in June 2018, then being diagnosed with an AVM and Aneurysm. Going for angiogram, then all the referrals. To be told it was inoperable. With the Neurosurgeon appointment still weeks away. After all the symptoms many of us suffer, headaches , nausia etc. Well after being sent away with pain killers, after visiting A+E with severe headache and trying to explain to them about my condition. I suffered another seizure. Hence Neurosurgeon appointment happened two days later. I have now been referred to Sheffield for Gamma Knife, although i am waiting for an appointment to come through, i am hoping this is going in the right direction. Especially as in A+E i was asked what i wanted them to do for me, then when leaving being told if it got any worse to return. I think being taken in by ambulance after having a seizure in the middle of a supermarket, was me saying it had got worse.
Prayers to all as always.
Mick


#2

Mick,

I’m sorry this has happened as it takes the wind out of your sails but its great to see that it pushes you up the priority list. I have to tell you that referrals between hospitals take ages, so you may well still need to be patient. I know mine took a month and at exactly the point I was waiting for my referral from Leicester to Nottingham, there was a TV news article about someone waiting 5 or 6 weeks for his referral to go from Nottingham to Sheffield for radiotherapy for an AVM. Given how rare these things are supposed to be, to find someone on TV with the same condition and busy waiting made me shout at the TV “I’m doing the same (FGS)!”

So, good luck. It sounds like you’ve moved up a notch. It sounds like they are starting to take you more seriously and if you feel worse will pay better attention to you. But it can still take a long time to be referred. Decide for yourself how long you’ll wait before starting to drive that referral yourself.

Very best wishes,

Richard


#3

You are in good hands…delays aside…I too was sent to Sheffield’s Royal Hallamshire Hospital (1997). Neurosurgeons Mr Forster & Mr Kemeny were very good. My AVM was too complicated to operate - they did try to for 18hrs & gave up at QMC Nottingham - if the above two Doctors have retired their successors will be well trained. It’ll take a while for the Stereotactic Radiosrgery to work. Best wishes on a speedy recovery.


#4

Thanks Kumar I will keep everyone updated, many thanks for the reassurance…
Mick…