Never trust the hospitals unless their specialists

Well I posted some time ago that I had started to lose sensations in the right hand side of my body and that I had visited the ER to have it checked out. Docs there said that I was fine and sent me home as nothing had changed with my AVM. 2 days later I was admitted to the other local hospital with growth of AVM and bleed on brian which had caused me to have a stroke. Hence the loss of feeling. Have spent a month in hosp being doped up with meds to re-route the nerve pathways but no specialists seen as they dont do them here. Luckily I am seeing my specialist next week to arrange a care plan and get things sorted. Still have absolutely no feelings on right hand side and have all stroke symptoms however I do have perfect manoeverability which is good. Just need walking aids and house renovation to make my life easier now.

Shouold have made my way to specialist hospital in first place and then I wouldnt have had to endure no help at all for the past month from all the local medical staff at both ERs that funnily enough had never seen an AVM stroke victim and boy didnt I enjoy looking like the freak on show to all the little neurologists who just had to come and have a gander. Hopefully all will get back to normal soon as even though it is inoperable they are going to offer radiotherapy to try and shring it. Anything has to be tried that may work right and although I know that I have a gruelling few months ahead I just hope that in the end, for the sake of my kids and myself, the treatment will work.

Hi Please check int othe Pittsburgh Gamma knife facillity. They are only one of a few in the US and help people with different brain issues. I think they can help you.


A doctor once told me never to doubt your instincts. If you think there's something wrong, then keep going until you find a doctor to take you seriously.

I can tell you that Radiotherapy is not an immediate solution. It takes years to shrink an AVM and there's still a risk of bleed in-between treatments. Radiotherapy takes years to completely work if it's going to shrink the AVM. There are many treatment options outside of craniotomy or radiotherapy. Definitely ask about those. The only immediate solution (allegedly) is surgery. I say allegedly because my daughter's required two surgeries to obliterate, though kids require annual follow-ups to watch for regrowth or residual AVM.

Not all ERs are familiar with AVMs, even if they see them on catscans. I am sorry yours didn't know what they were dealing with and ended up with you suffering a stroke as well. I hope you get some good news and a plan that will allow you to move on with your life with your kids.

Best wishes!