Hi, I just found this group. Here’s a little about me.
I’m a 27 year old happily married Navy wife with 3 kids. I’ve always had horrible headaches…for as long as I can remember. In high school my docs used to tell me it was the stress of being a teenager and hormones. As I got older my docs just said it was migraines and stress. Last year we got orders to move to upstate NY where my husband is an instructor. I went to see my new doctor and told her a little about my history. She sent me to have a CT to be on the safe side. The AVM was found and she sent me to see a Neurosurgeon. I have an AVM on the right occipital lobe. My neurosurgeon seems unsure how to go about my treatment. He says that it is on the surface and I could possibly have a craniotomy done but he is worried about vision loss. He said he wants to talk to the other docs about radiosurgery but is unsure if that will even work for me because I have a large AVM. He also suggested we just leave it alone and Hope that it doesn’t bleed. Hmmm…doesn’t sound too promising.
Anyway, I’m just excited to see that there are people that I can relate to.
Hi, Resa. This is Connie from Brewster, New York. As a young adult, I had bouts of leftside numbing and drooping, but every time I went to the doctor, Iwas also told that it was just stress. I think that is what doctors say when they have no idea. lol
Make sure you get more than one opinion before you decide what treatment to follow, Resa. I was so scare that I just did what I was told. I’ve gotten much sicker since (and was not warned about the side effects).
You are so lucky about the AVM not bleeding. Most of us have experienced a bleed and it’s not fun.
If the AVM is treatable, definitely get it treated. But as mentioned below, seek out some other neurosurgeons for additional opinions. There are a few world-renown neurosurgeons and AVM specialists that you might consider if you can afford flying out for consultations.
UT Southwestern, Barrow Institute, Mayo Clinic, just to name a few. Good luck and please keep us posted whenever you have a consultation.
Hi, Resa-
Welcome to the site. Its been amazing to me how many people out there are dealing with this issue in heroic ways. You’ll be excited and inspired here.
I’m with many others who reccomend you have multiple opinions. Its a major decision and you should have as much information as possible. There’s some incredible stories on here about people who had craniotomies. If I had heard about them before I had the Gamma-Knife I may considered that more seriously. However, I’ve great success so far with the GK procedure.
Anytime you need to talk, rant, rave or laugh- we’re here.
Hi Resa,
I am also lucky to never have a major bleed (only two pin hole bleeds). I was told my AVM was to large to treat but in the past four years I started getting embolizatons and radiation treatments due to additional side effects occuring. As others said I would get as many opinions from other neurosurgeons.
Hi Resa,
You came to the right place. All of these friends will help and support any way they can! Believe me they are the only ones who really know! Follow what all say! we SURVIVORS ARE THE TURE TEST! The doc. don’t totally know because this is such a new field of study! Check out some of the others who are specialized in field! Sound like they can get that out …Don’t sit back and wait for a bleed…be proactive!
You are the one who has to take control of your own health! Just ask the group! If I can help in any way, here for u!
Sending Angel light and love…d
Hi Resa
Welcome! I agree with everyone who’s already replied - get more opinions and ensure they do a MRI and an angiogram before they decide on any treatments.