It's been awhile since I've been on here

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.

I know better than most how you are feeling with regards to doctors. many of us on this site has had run-ins with awful doctors such as these. Its really hard to get a correct diagnosis then when they diagnose it they often conflict on how to treat it leaving us in the wings of their “expertise”. but most importantly with us its important to find a specialist. I encountered docs here in Nashville who told me that my migraines had nothing to do with avm or my speech problems, inability to walk properly following a spinal tap or anything like that with avm but i have come to know sometimes the doctors are so “smart” they are “stupid”. We really do have alot bout our avms in common. where is yours located? mine is in the right central part of brain pressing against pituitary stalk and optic chiasm and hypothalamus. its very small in comparison only about 1cm big but its the location that gives me a grade 3 on spetzler scale. how bout you?

That’s awful that you’ve gotten such a runaround from all of hte docs. I feel very lucky to have the medical team I have here in Texas.

The arrogance of some these so-called doctors always amazes me! Please keep us posted as to your progress!