It's been quite awhile since my last blog! I have since updated my main page. It has been a crazy seven months!
I know this sounds silly, but I still have not had my MRA results read to me. The first Neurologist didn't tell me much, except that after reading the MRI, she thought that the AVM was about 5cm and that most of the time, Neurosurgeons will just let them go. She also said that she doubted very highly that my migraines are from my AVM. She sent me on my way scheduled for an MRA and set up to see a Neurosurgeon whom I later found out from his office staff that he does nothing with AVMs. Needless to say, this appt was cancelled.
I got my MRA in March which is when I found out that there may be several other small AVMs present but they couldn't be detected, so I would need an arteriogram/angiogram. So....I had an appt with a Neurosurgeon in Pittsburgh who was to read my reports, etc... ( By the way, I got my reports and discs from the hospital, so I knew what they said, just not how to read them.) After about a two hour wait which I didn't complain because I was very interested in learning what was going on, this so-called Neurosurgeon came into the room, stood over top of my husband and I and simply said that I was to have and arteriogram done the folllowing week, and his nurse will set it up, etc....He did not sit down, go over any tests, or put the discs in the computer. I tried to ask questions about concerns with my HHT, etc...he just basically blew it off and me as well and out the door he went! I was sooooooo mad! Once again...I did not get a reading! I did not have the test done either!
So, My family doctor set me up with another Neurologist to at least read my records for me. This was going to take until July to get in. In the meantime, I was able to set up an appointment at U Penn In Philadelphia for my HHT problems to make sure I did not have any PAVMs in my lungs first. This was set up over a three day period at the end of last month. Thank God there was not any. During that visit, I was told I needed to get an appointment asap with the Neurosurgeon there about my brain AVM. I was also told that it was a good thing that I did not have the arteriogram done in Pittsburgh! ( I guess you just never know!) It was probably a good thing that the doctor didn't spend time with me that day, etc...or I very well may have had it done. So now....I'm just waiting again. Very nervously waiting.