My 24 year old son was diagnosed with a C2/C3 perimedullary AVM in June 2022 when it ruptured. He recovered quite well but has ongoing slight weakness on his left side and gets the odd headache. He is currently under the care of Mr Jash Patel at John Radcliffe who is monitoring the AVM with annual MRIs as surgical intervention is far too risky.
Last weekend while out drinking my son suffered a very sudden onset of excruciating head pain which caused him to collapse and his arms and legs were weak so he was taken to John Radcliffe A&E. A head CT, which was done 12 hours after the episode, showed no bleed which was reassuring but ED staff were unable to answer what caused the sudden onset of pain and I’m yet to receive a response from Mr Patel. The head pain lasted for about an hour,
It would be helpful to know from others with a spinal AVM, particularly in the neck area like my son, if this is a symptom with spinal AVMs and what causes it. Is it pressure caused by the AVM? I also wonder if the head CT had been done while he was experiencing the pain would it have showed anything?
I think he had been overdoing things running up to the episode and had played golf and carrying heavy golf clubs 3 times that week, which would not have helped!
Does anyone find that drinking alcohol triggers bad headaches?
Finally, can anyone recommend a Spinal AVM specialist in the UK please? Mr Patel is undoubtedly an excellent neurosurgeon but his experience with spinal AVMs is limited so I would like to find a spinal AVM specialist if possible.
Thank you in advance!