The waiting game

I was told on the 5th May that I have a AVM. A subsequent letter informs me that it is a Posterior Fossa AVM and then continues with many medical terms that really I have no idea about.

I’m still waiting to see a Neurosurgeon. Living here in the UK I’m reliably informed that I may have to wait 6 months until I get an appointment. I’m so fed up with waiting. The AVM causes Trigeminal Neuralgia which some days is so painful I can’t eat or speak. How they expect a person to continue day-to-day living like this is beyond me.

I have tried E Mailing and ringing the hospital to find out when I might be seen but there is no response.

Just cheesed off right now X x

Hi jo! wer in the uk are you! i can totally sympathize with you on this one. I waited 6 months for consultation at glasgow which was done on the 7th of july ther. I am now booked in for my angio on the 26 aug so things are movin for me now! I felt that any questions i needed answered before my consultation was from this great support group. No doctor seemed to know much! and being able to carry on day to day was the worst for me. Its only now that i am ready to get myself back to work, and part of this is down to this page. I do hope you find reasurance and comfort from this page and your loved ones!! take care lynn x x

Hay mate, the waiting is the worst part, I live in Australia so am not sure how things work over there. I was seen and operated on pretty fast because I was lucky enough to be insured, I would hate to think what would have happened if I was not.
I don’t know if it will work or not but maybe the next time you are in a heap of pain try calling an ambulance or going to the ER maybe you might get in a bit faster.
I don’t really know because I don’t know your system.

Best of luck mate

Kia Kaha Taiki


Thinking of you and hope the wait isnt to long!

Thank you everyone.

I live in Hemel Hempstead in Hertfordshire and I go to The National Hospital for Neurology and Neurosurgery in London for treatment. I have previously called an ambulance during a particularly painful bout of TN and because the A and E Dr couldn’t trigger the pain himself I was sent on my way. TN seems to be very low down in the NHS’s priorities along with many other illnesses.

I am going to try and talk to my Neurologist and see if he can possibly hurry things along a bit. I have been seeing him since the TN started in 2008 and although it has been a slow path getting diagnosed properly he has never stopped searching for answers and for that I’m grateful.

It has been a good day today. I work full-time and my bosses are the kindest people you could ever wish to work for. I can take time out whenever needed and recently I was promoted which made my day! My husband is very supportive and my daughter who is 15 is a treasure.

I’ll keep you all updated with my progress ( or not! ) and thank you once again.

Kind regards,