My name is Vicki, and I’m a 19-year-old college student recently diagnosed with a cerebral AVM and a pulmonary AVM. It was a such a huge relief to discover this support group!
Anyways, I’m wondering if any (or many) of you have chose to do nothing, or are maybe thinking of discontinuing treatment? I’ve been through two brain embolizations, one lung embolization, and radiation treatment so far. My lesion keeps recurring in portions after each embolization, and it seems like these repeated embolizations–while extremely taxing for my health and energy–are making little progress for my overall treatment. I’ve had to take a leave of absence from school for a semester, and I really feel like these repeated treatments are seriously setting me back. I’m thinking about postponing treatment for a few years. Has anyone here done the same? What were the results?
Anyways, I’m flying back to Chicago later this afternoon, so I’ll flesh out my profile a bit later, maybe add a picture to humanize our interactions. Nice to meet you guys, and thanks in advance!
Yes there are some on this site that have elected to do nothing. If you wanted to read their posts, you could go to the search box at the upper right and type in “do nothing”. Warning, there are like 120 pages of comments that contain those words, though not all with refer to doing nothing as far as treatment.
You have to do what you feel comfortable with, and not let anyone talk you into one route or another. At your age, with your whole life ahead of you, personally, I would like to see you continue treatment. If you were my daughter, that’s what I would recommend, but like I said, don’t let me or anyone sway you unless you want to go that route.
I know the least about non-brain AVMs. It is my understanding that non-brain AVMs can reoccur after treatment. Some on here have had to have them treated a lot. Brain AVMs can cause very serious issues if they bleed. Typically for adults, brain avms once treated reoccur less frequently.
My recommendation would be to have your files reviewed by a 2nd AVM treatment center to see what they recommend. You could ask about the risk of waiting to do treatment and see what kind of response you get.
Best wishes, and no matter which route you pick, you are welcome to hang out here.
Ron, KS
Hello! I have a brain AVM that I only found out about due to a car accident. I have for the last 6 years decided to monitor it & not do anything with it, since I don’t have any symptoms besides the occassional headaches & vision problems. So far so good, but I am looking into treatment options in the next year just because the anxiety knowing I have it is driving me crazy! I would maybe talk to your doctor & see what your risks are and see what they think about you waiting a few years. If they say there’s not a large risk to wait a little bit then that’s great! Take care & feel free to message me if you’d like to talk! Also welcome to this site! It has been very helpful for me!!
I’ve read that sometimes they go away on their own. I also read somewhere that doctors think everyone has them at some point in their lives, but that they just go away on their own and are never found. But obviously in some people they don’t go away. And I’m not an expert! It’s your body and you can make your own decisions about your treatment, if you think that a wait-and-see attitude is better for you, then do it! Sometimes in some cases I think doctors are a little too ready and willing to practice their craft (either because of lawsuits or eagerness). Another question to consider is: how did your AVM present itself? Did it rupture? Or did you happen to have a scan of something and they happened to find it? Carefully think it over, do some research and talk to family and friends and see what might be the best route for you. Your AVM sounds like it really wants to stick around for the party So hang in there and stay strong with whatever decision you make!
Hey everyone, thanks for the advice! I’ll check out the other threads on this discussion board soon. I actually discovered my AVM because it ruptured (during Christmas eve, I believe), but luckily I emerged relatively unscathed from that battle. Since I have already had two brain embolizations and I’m currently waiting on the results of the radiation, the chances of having my AVM rupture again might be reduced somewhat. That being said, it’s still a dice roll—but I’m leaning towards waiting three years (after I graduate) for any further major procedures.
Brittany, I’m being treated at the University of Chicago Medical Center. It is a decent medical facility with good doctors, but I chose it over Northwestern for the sake of convenience (I attend the University of Chicago, so it would be easy for me to walk 10 minutes to the Center for Advanced Medicine to get an MRI or whatever between classes if necessary). I have no way of comparing, but Northwestern seems to have a stronger neurosurgery/neurology department from word-of-mouth (although I don’t know if they have better specialists specifically for AVM treatment).
So hang in there and stay strong with whatever decision you make!