Getting the right care

Concerns specific to those in the United Kingdom

Getting the right care

Postby andymac » Tue Apr 09, 2013 10:13 am

I was diagnosed with multiple cavernomas in february after an FMRI scan and have been left somewhat rudderless since in all honesty, but am starting to get to grips with things.
Being a patient at the National Neurological Hospital, I would hope that I'm in the right hands but I'm increasingly worried that not a lot of doctors really know what they're talking about when it comes to this condition. Maybe I'm wrong in this assumption and some of you with more experience of dealing with these things can put me straight.
My next appointment isn't until July, and I'm due to be seeing a new consultant from then on. I'm not sure who it'll be yet, and I'm wondering if any of you have any advice as far as making sure I'm seen by the right person. I realise that applying pressure through my GP might help, but I'm a novice to all of this and am finding it all a bit confusing at the moment. Any tips?
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Re: Getting the right care

Postby tallpaul » Wed Apr 10, 2013 9:32 pm

As you'll gather this forum is not very active. Can I suggest you become a member of Cavernoma Alliance UK (the sister organisation of AA here) and then post to either the cavernoma-chat mailing list or their Facebook group. Start
Paul Oldham, cavernoma in pons, bled 2002
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