AVM Survivors Network

QE Hospital Birmingham


Hi again, Keep ringing your hospital to see if anybody has cancelled. Also phone your consultants secartary and ask if she can put you on their cancellation lists.

Worth a try also to go and see your go and tell him how it is effecting you mentally and see if he will do an urgent refer for you. Or try going private if you can. At least that way if they put you forward for an op it will be a lot quicker. Hope this helps.

Kind regards,



Hi Richard, Forgot to say that my consultant did say Birmingham were carrying out gamma knife but he did not tell me at the time they were and when he did tell me they had stopped it on the NHS.

Kind regards,



I have been trying to call the consultant’s secretary and emailing her with no luck, guess there’s just a big waiting list on the NHS. Luckily I have had no symptoms since being on Keppra.


Hi Aquarius, Keep trying don’t give up. Phone on day of clinic as well and speak to receptionist and ask if there has been any cancellations.

Good luck,





I found chasing the consultant’s secretary quite a painful process and very dissatisfying. I would go to your GP and tell them how dissatisfied you are with the situation. If there is something worthwhile to be found in your results, it seems completely wrong to wait 6 months. If there is little of alarm in your results (and therefore ok to wait 6 months) then you’d kinda hope the consultant could tell the GP and the GP be able to talk you through. Unlikely, I think, that they would, but with zero feedback for 6 months that is crazy.

Go wind up your GP.

I found one of my GPs very supportive and very motivated to get good treatment for her patient; other GPs I found to hold themselves to know nothing in this area and merely rely on the hospital to make all calls.

Worth winding up your GP.

Good luck!