I’ve just had my yearly mri and results I need to go for gamma knife again.life since my avm rupture has been tough and the last year has been the worst.been having a lot of neurological problems and no doctors seem to know what’s causing them I feel so alone in life now I just feel like I’m living for this bomb in my head to take me my anxiety is through the roof just want to talk to people that know what all this feels like.
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Amanda,
I know how worrying these things are when they’re untreated / showing themselves again. I hope some other people will share their worries and story, too.
We are both in Leicestershire. If it helps at all, we could meet and chat. There’s another lady I know of in Leicestershire @eternalsunshine so maybe we could have a mini get together, if that would be helpful.
Very best wishes,
Richard
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Hi Richard thanks for the message it helps to know I’m not alone in all of this stressful time.it would be nice to have a chat sometime.
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Whenever you need, just let me know. I’m retired, so pretty flexible on days and times!
I have not had a chance to reply since I went to the CCM convention in Miami, but I thought I would share the short list of experts that I encountered. Several surgeons were there to admire the work of others, and I feel like it would be wrong of me not to share, if not for a mere second opinion. Dr. Jacques Morcos - University of Miami (practicing Neurosurgeon, list is too long on accomplishments), Dr. Gary Steinberg - Stanford (other surgeons admiring his brain stem work). Dr. Morcos had some specific insight on gamma that was interesting, but I do not want to transpose his words in anyway. They both do consults and second opinions. Lastly of course is Dr. Lawton of the Barrow Institute in Phoenix. Maybe additional insight would be helpful - I just wanted to make this available.
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I don’t know if you appreciate this but Amanda and I are both in the UK. So sharing this kind of info is great for a conversation about finding a great doctor in the US but doesn’t quite fit with this conversation.
We are a very international community. If you ever wonder where someone is, it should show in their profile – just click on their icon and you’ll see.
Hope this helps 
Richard
Hi DickD, yes, I know you guys are across the pond, but there were surgeons from Europe to study Dr. Steinberg’s work, and Dr. Morcos goes overseas. Given the sphere of influence they have and the seriousness of the condition, I can’t help but think for those that feel lost, which i completely empathize with, these guys have resources and expertise that may help. The neurosurgeon world is very small and with these guys internationally recognized, I thought it may help.
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