Calling all New Zealanders with Cavernoma........

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Calling all New Zealanders with Cavernoma........

Postby carmenpage » Sun Feb 17, 2019 10:41 pm

Hi ya'll, my name is Carmen & I am from the Waikato in NZ, I was diagnosed with inoperable brainstem cavernoma in March 2018, this has completely tipped my world upside down & sideways.
With the random symptoms occurring & opinions from "specialists" that contradict everything I am experiencing, I even took the Alliance Guidelines to a Neurologist who has never heard of them before!! So information is very limited in New Zealand & I am finding Neuro's are dismissing all symptoms as "migraine" or "anxiety" this is very frustrating along with their advice that it is absolutely impossible to operate, this is also frustrating when we read about other brainstem cav being resected outside of NZ. So if any of you here in NZ can please get in touch, I have started a NZ FB page as I couldnt find any support here in NZ, its called Cavernoma & AVM Support New Zealand aka The Brainberries, please jump on board so we can create some awareness in NZ, being united is the only way our NZ specialists will take our symptoms seriously & perhaps learn more about these aliens in our heads. CALLING ALL NEW ZEALANDERS!!! :)
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Re: Calling all New Zealanders with Cavernoma........

Postby Elizabeth » Mon Feb 18, 2019 12:05 am

Welcome,

I'm sorry you are having such a hard time finding experts and connecting with anyone that knows anything. Its really hard and frustrating. This forum is pretty quite, but have you tried the Facebook angioma group? My understanding is that its more active...you might have better luck finding people there. Of course, you are welcome here, but you might not get any responses here. Sorry. Take care!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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