This is all still new to me. Aug of 2013 I had an MRI done because my headaches wore getting worse. They said I had an avm that hasn’t bled. Then in Aug 2014 I was having horrie pressure and headaches another MRI was done and now drs say its a ccm that bled and we will watch it. I went and got a couple other opinions one was in Chicago and the Dr there said to possibly remove it. That was in sept I have just went back and now the ccm has grown and a 2nd bleed since sept. He suggests surgery. I am flying to john Hopkins Friday to get another opinion. The only symptoms I have now are the headaches and head pressure. 2 bleeds in a 6 month time the Dr Says is not good. I just don’t know what to do.
Hi Sara… I’m just a little confused. So I wanted to clarify… Do u have an AVM? Or was the DVA originally thought to be an AVM??
DVAs are often associated w/ CMs & are not treatable.
Hi Sara, I was checking in to see how you are doing. I have a CM with DVA in my cerebellum. I had a micro bleed in August 2014 and then in January 2015. Surgery is scheduled for Feb 10 in Phoenix at Barrow with Dr Spetzler. Barrow has a wonderful second opinion program if you are still in the process of getting opinions. Best wishes for you!
Hi Sara, I am doing great after my surgery. There were no deficits after surgery and I was released from the hospital two days after surgery. I was very anxious about the procedure but everyone at Barrow was great. They answered all my questions. They were confident which made me confident in my decision. I will share anything about the experience. Fatigue is the main issue after surgery. However, having just battled breast cancer before surgery my symptoms may be increased due to the effects of chemo. I would have the surgery again at Barrow with no hesitation. Private message me with any questions or if you want my cell number to chat.
Hi heather! I was curious if you could elaborate on the “second opinion program” you spoke about? I have a CCM on my brain stem that bled a month ago & have been unsuccessful in finding any help or answers.