I was diagnosed 19 months ago with a 3 cm AVM in my occipital lobe and still have not started my embolisation treatment. I have been given false hope too many times. I am totally stressed out waiting for treatment that I now feel about having nothing at all. I just want to get on with my life and can't take much more. Hospital told me to put in a complaint as I was told that I would get treatment next week and now it is going to be a further month. The NHS is crumbling... Susan
Hi Susan, I understand your concern. I have felt the same way too. The hard thing is just because we are ready to move on does not mean that the avm is. It is your chocie, but find out about your natural risk to treatment risk. My natrual risk is high, so not treating could be devastating. I wish you the best in your journey. If they keep pushing it back it could be time to speak to another neurosurgeon. Stay strong! We are here when you need us. I hope this helps!
It is time to find a new neurosurgeon. Waiting for 19 months is unacceptable, in my opinion. I don't blame you for your frustration and for being tempted to not pursue treatment. However, don't let a doctor put your health on the back burner. Go to someone for whom you are a priority. You have the right to demand the best for yourself. Best wishes. K
Thanks for your replies. Unfortunately, in Northern Ireland there is only one neuro-radiologist that performs these embolisation treatments. I was also told that there are shortage of anaethetists and beds for these elective AVM treatments.
I am so sorry you are having problems getting treatment. The avm is hard enough to deal wish. You are in my thoughts. I wish you all the best of luck in your journey!