First consultation

I had my first consulatation with a neurosurgeon today. I was a bag of nerves all morning and in the waiting room, but it was fine and the surgeon was absolutely lovely.

The next step for me will be an angiogram to work out exactly what this thing is - he’s not 100 per cent sure it is an AVM - could be a cavernoma. I had to look that up - I live in the UK and am being treated on the NHS, so it’s going to be a few months before that happens. I’m cool with that - I’m otherwise fit and healthy so it’s only right that people who need more urgent care or have been waiting longer go first!

He showed me the MRI scans that were done in hospital a couple of months ago - I’m rather glad I didn’t see them at the time because this thingy shows up so clearly and looks rather larger than it actually is!

When I was in the hospital I was told not to drive for a year, but the surgeon said I should actually surrender my driving licence to the DVLA for the time being as well. I don’t actually own a car at the moment so that’s not a problem, but it does feel a little bit like having my wings clipped. Also I have to keep taking the lamotrigine for the foreseeable future - it might come down to whether I eventually want to start driving again. If I do, I have to keep taking it. It’s no real trouble, except for remembering to go back to my GP for a top up!

I’m going to ask my GP whether I can get the generic version rather than Lactimal because although the prescription charge is the same for me, it’ll cost the NHS a fraction of the price. It may well be down to what the pharmacy has in stock, but it’s worth a shot.

On the plus side, he said I can carry on running (my main hobby) as long as it doesn’t raise my blood pressure too much. He recommended getting a blood pressure monitor and taking it on a run to see how high it gets. That’ll certainly look interesting! With any luck, it’ll be fine! So happy about that!

So a productive meeting, all things considered! Can’t say I’m really looking forward to an angiogram, but that won’t be for a while and when it does happen, it’ll be good to find out exactly what this thing is.

Glad your NS appt. went well & wishing you the best w/your upcoming angio!
If your AVM turns out to be a cavernoma instead, (also known as cavernous malformation), please check out our sub-community @
Best wishes,

Thanks Patti, will do!

Wow…sounds like life has thrown you a few curveballs. You sound like you’re handling things very well. I wish you the best and I think this site is filled with some great people. Not to say that I hope it’s an AVM, but if it is then please throw out more questions and never be afraid to reach out. I’ve done so many times on here and have always been so touched by the responses I’ve gotten.
Wishing you the very best,