My sis and her Spinal AVM

[Steve]

Hello from Australia,

I came across this site while searching for answers to my sisters AVM condition. She is at this time back in hospital suffering from severe pain. This is her story thus far!

My beautiful sister, Nicole, has a spinal AVM. It was discovered via MRI here in Australia, after she suffered paralysis while pregnant in March 2005. Bubs was born via C-section and my sis was then rushed to the Royal Melbourne Hospital where she had a month of monitoring and 2 angiograms.

The professor claimed what she had was rare and felt it too dangerous to perform surgery at that time - so she was sent home to a nearby hospital for physio and pain management.

To this present day she has not been told a great deal of what may eventuate, only that they need to see a reduced size in the AVM before they can commence surgery?! She feels like a walking time bomb! And we her family, feel useless.

Thankfully she has had a lot of feeling come back around her groin and leg, although in parts still has minor tingling and or no feeling. She can now go to the toilet on her own, so the catheter has been removed, much to her relief.
The pain at times is still excruciating for her.

She has been back down to Melbourne since being home, for another angiogram - only to be told it still has not reduced in size and they really do not want to risk surgery. She is scheduled to go back down to Melbourne for yet another angiogram in a few weeks. In the meantime not much else has been advised and questions remain unanswered. We are feeling frightfully alone and at a loss with this!

We are told Nicole is the only patient to be discovered with a spinal AVM in Australia at this time!!??

[sarah morhun]

hi. my name is sarah.
so sorry to hear about ur sister, but i just want to let u no i live in australia melb actually and have a spinal avm, for the last 2 years. i get treated through the royal melbourne hospital. my surgeons name is john laidlaw, hes a professor.
i have the tingling an nubness but through my right arm. my avm is located at the top of my spine near my neck...
im not sure why im replyin but maybe he can help.
i awaitin my 2nd surgery so im sorry i dont have better news.