Just wanted to post an update, I have gotten the measurements of my AVM now-- it measures 2cm x 1.4cm x 3.8cm.
I also finally got an appointment with a neurosurgeon, on the 29th, so I hope to update again this weekend and keep anyone reading this, in the loop on things. You can also check the more regular updates on either of pages at MySpace or Facebook, under my email address… ■■■■■■■■■■■■■■■■■■■■■■■■ (the first name reads as Angelique- but its me)
thanks to everyone for thier conituned support- we are finally making progress though.
One quick question for everyone though. Did anyone else have trouble when it came to working or energy levels. I found myself having to cut back my hours, because I wuold get so tired and then would start having the shaking episodes, just wondering if anyone else expereince this, or if it was my own, self induces stress level that did it?
Hello Angelique, I haven’t welcomed you yet, so welcome. I’m glad you got an appointment relatively quickly. Hopefully the neurosurgeon can offer some hope and a treatment plan for you. After reading your story, I’m amazed that your AVM wasn’t discovered sooner, escpecially after you had the vision loss episode. I’m wondering why the doctors didn’t order an MRI then. It looks like you are doing everything you can to learn as much as you can and that is a very good thing. Just ask the neurosurgeon as many questions as you can think of. Write them down so you don’t forget and it’s a good idea to take notes at the appointment as well. Best of luck to you and I’ll look forward to hearing about the appointment.
THank you Trish. I just got back and yes, eventhe Neruosurgeon and his nurse were a little surprised that every time the doc’s couldn’t explain anything- it was always the same answer… "it’s because you are a girl…"
I don’t remember if they did an MRI, and I have heard a lot of people say that if they aren’t looking for this condition, it is often overlooked. perhaps that is what happened with me.
Thank you and I am posting in a few minutes with what the Surgeon suggested to my parents and I.