AVM just found, what do I do next?

My doctor scheduled a CT scan after I complained about migraines and had uncontrollable vomiting episodes three times since May 2011. The CT scan came back abnormal and they sent me to the ER the day I had the scan. At the ER they did a CT scan with contrast and confirmed a mass in my right parietal lobe. This happened on Monday, 10/17. I had no symptoms during my time at the ER so they sent me home. I had an MRI on Thursday, 10/20. My doctor called me on Friday and told m the preliminary report suggested AVM and she would make an appointment with neurology for me. It’s now Wednesday, 10/26 and I still don’t have an appointment lined up.

Does this seem like a normal time frame for responding to a possible AVM? My family is really upset and I hoped I’d have the neuro appointment scheduled by now but I don’t. Should I seek a second opinion or is my doctor’s office responding in a timely enough fashion? Any insight would be appreciated! Thanks!

EDIT 11/1/11: First, WOW! Thanks for all the support and kind words. This community is great and has put me at ease. Second, I talked to the neurosurgeon yesterday and my test so far have been inconclusive. He thinks it’s probably AVM, but we have to do an angiogram so he can get a better picture. The angio is scheduled for this Friday. I’m excited that this should finally get me and my family some answers. Thanks again!

I will begin by sharing with you that you did the right thing in joining this support group. I’m sure you’re feeling a tangle of emotions and need guidance. The most important thing you should know is that no 2 AVMs are identical. Members of this group can help you by empathizing and sharing their experiences, but noone knows more than your doctors. There is no such thing as a dumb question. Ask your doctors as much as you need/want- that’s what they’re there for. From my understanding, an AVM is something you are born with, and many go through life without even knowing of its existence as it never bothered them. It would seem to me that as long as there is no anuerism or hemorhage, it is ok to wait. I wouldn’t suggest waiting a few months, but definitely a week should be fine. If you feel uncomfortable or just unsure you can definitely get a second opinion. In the medical field it is almost accepted that we need it.
Please feel free to reach out to us with any questions, feelings, or concerns. That’s what we’re here for!

The doctor just called! I have an appointment with a neurosurgeon on Monday, 10/31. Spoooky! I feel so much better now. Thanks for the encouragement, advice, and warm welcome!

First off, You need to set up an appointment with a Nuerosurgen ASAP. I would call that Dr., Back and tell him to send a refferal to both DR’s and U Call to make ur appointment’s ur self so, u have the controll. Also, don’t just get one oponion. Get Two to Three. That way u can decide for ur self what would be the best route to go. My AVM is in the left instead of the right. I had Severe hmigranes when I was younger, but my mom thought that was normal since she had migranes as well. As i got older they just stoped. I was happy and really didn’t think anything of it. But, all of a sudden one day I had a seizure and that’s when I found out. My AVM Started out small, which caused the migranes, but grew bigger as time went on. I guess that’s why headaches stopped bc it started effecting other parts of my brain. Kinda wierd!
When I found out I had one My mother and husband freaked out and we made appointments two days after finding out. And had them two weeks later. U need to stay on their ass’s bc this is ur life were talking about. U could bleed out anytime and Die. Sorry that sounded harsh, but it’s the truth.
Anyways, keep me updated on how thing’s are going for u.

I would say the dr’s never move at the speed we want and need them to!! But for me it did take a few weeks to get in with my nuero dr to just speak to him and find out what the heck an avm was. There was hardly any info online and I was going crazy. If you dont get an appt set up my next week I would call your dr’s office back and see what the hold up is. Best of luck to you and please keep us posted on how things are going!!! I’m currently sitting here waiting for an MRI on Tuesday the 1st to see of there is signs of bleeding or swelling in my brain. I’m so upset with having to wait. Sometimes the dr’s dont realize what this wait does to us. Stay strong and keep on top of them :slight_smile:

That’s great that you have an appointment so soon! We’ll be thinking of you… feel free to keep us updated as you feel comfortable with…