Getting the ball rolling

After meeting with the Radio Surgeon at RIH, I felt really uneasy. We waited for a long time, and my grandfather had passed away and was being waked that night- we more then likely should have canceled the appointment but really needed to know more about what was going on. I guess playing the waiting game was something I should get used to. When we finally got in to talk to him he was hard to understand, very soft spoken with a harsh Swedish accent. He didn’t know much about me and kept asking when I had my seizure, and looking into my file saying right? right? It was sort of scary. He explained to me about Gamma Knife, and how I’d more then likely need 2 procedures because of the size of my AVM. I wasn’t excited about having to have another angio, or having something screwed into my head. I think the nurse who gave us the tour of the room with the GK was more informative all in all. She showed us a picture of a girl who had the frame on her head and she was smiling- bullshit! I highly doubt with that thing screwed into your head you’d be smiling unless they gave you some happy stuff… Either way, maybe we made him uneasy because it was me, my mom and dad and my older sister. My mom said randomly that we would be going for a second opinion, no offense. It definitely just didn’t feel kosher…he said I’d get a call soon about following up… I have yet to receive anything

That was last Thursday. Yesterday I met with Dr. Pryor at MGH in Boston. Definitely the extreme opposite of Dr. Noren at RIH. He had a weird way of describing things with some dry sarcasm and definitely scared the shit out of me, yet at the same time he was very confident and made me understand a lot more then I previously knew about my AVM. We brought my films, which I had gotten 2 copies of because I wanted to look at them myself too. My mom was freaked out and tried to tell me that the more I look at them that I’m going to keep this bad image in my mind. Yet- my mind has been keeping this dirty little secret from me for 22 years, SURPRISE!!! Regardless, this was the first time my mom and dad had seen my scans and angio. He asked my mom if she was scared, and she responded “petrified”. My poor mom… as much as I know that it’s not a walk in the park to be in my shoes, I really have no idea what it is to be her watching her youngest try and overcome this. We probably spent 3 hours talking to the Dr. After talking with 3 doctors, he was the only one that told me I had 4 options. FOUR? really… All I really wanted at this point was to get this show on the road. I’d been previously told that a crainiotomy was out of the question. It was too big and nowhere that anyone wanted to touch. I’d need 2 Radiations and it would take 3-4 years to show any results, again because of the size. uhmmm 3-4 years with the possibility of a bleed. no bueno. go for some embo’s then radiation. and still have to wait? He just pretty much came out and wasn’t agreeing with anything I’d been told before. He suggested we start with embolization, cut off the feeds that were in a deep and bad spot so we could do more embolization and see where we stand for a craniotomy. He didn’t agree with radiation after embo. At this point, my risk would be losing feeling in my left leg because of where it is- but there is risk walking across the street… nothing is promised in this life. I left there hoping to hear back next week sometime- probably for a follow up appointment sometime next month or something. His office called me this morning, I have a preadmission appointment on Friday and go for my first embo on the 14th. Wish me luck!

I’m glad things are moveing along for you. I do wish you luck.

I’m glad your getting some answers. It sounds like you found a good doctor, one who wants to explore all options. As a mom of a kid that had an AVM it is heart wrenching to see your children go through this. He is my youngest of three. His AVM was graded between a 4-5 and he had 4 embos before his first crainotomy and 1 embo before his second. His was difuse, which is how yours sounds, too. If he would have had deficits it would have affected his right side mainly his leg and that’s why they could operate, because the location was not to eloquent. I never really got a straight answer to exact size, but he is 12 and they said it was about the size of his fist, so big enough. The reason I am giving you these details is because he is doing great, no deficits and back to school in 2-1/2 weeks. Not to say that’s how it is for everyone, but these AVMs can be conquered, without destroying you. Sometimes there are temporary set backs better stay postitive and hug your mom she needs it. Best wishes on April 14th, which by the way is my 30th anniversary.

WOW! I can’t tell you how grateful I am to hear such good news for you & your son- and to be able to share it with me- really means more then you know. It gave me chills! At this point we know it’s a grade 5, and explained multiple times to be large but not the largest that’s been seen or treated, with direct reference each time to his entire palm. yikes! Although that was my first doctor, with in total has done maybe 150 procedures on 15-20 patients. Currently the doctor treating me now has alot more under his belt- so if it doesn’t scare the crap out of him, then I guess I can be pretty confident hahah! I think at this point it feels a little more real, because before all that I really cared about was getting rid of the migraines and not having to have my head shaved. so petty… this has been such an eye opener- even if it’s been less then 3 weeks. The things you take for granted and don’t even realize, it’s ridiculous.

I am so glad that you found a doctor you’re happy with! Good luck, Sarah Jane!

Saraj Jane, thank goodness you got another opinion with someone who knows what he is taking about and could make you understand more about whay is going on in your head, Good luck and I will keep you in my thoughts and prayers, take care.