I want to add another comment. I've kept up with what has been said on this discussion. You're a bright young lady who can think for herself and, can see the writings on the wall. You've weighed out the pro's with the cons (med cost, etc) along with those that are most important to you. Bad things (in this case an AVM) happen to good, smart, productive young women. (I wish they didn't.) Now, how you handle the news can be very different. I think you're handling it in the best way possible for you, with your diagnosis, with the advice you've received from your Dr's and most importantly, with your family. I'm sure you've spent countless hours researching online. In the end, you've gone through all the stages of grief; you accept... I commend YOU, for making your decision and all that goes along with that, and your mom, for being there to support you. No AVM is the same, so I deal with mine differently.
Mari
PS - Continued good luck with school. Any advice for me with my kids? Light a fire under them? :)
How do you know it is not going to kill you, as you stated. What is the difference to you or any of us if an AVM is a syndrome or a disease? You are 16 and you think you are indestructible, like most young people. I was 9 and had no part in any decisions made about me and my brain and brain surgery done in 1959, and the seizure meds taken afterwards. I am 63 now, still taking seizure meds. I had and still have a great life, a fabulous son and a new granddaughter. I ate and still eat burgers at times, hate Lima beans, lived through DDT being sprayed along with other chemicals I must have come in contact with like everyone else. I have flown on airplanes, and have no control over the plane or it’s safety or maintenance. I have skiied, backpacked, all sorts of fun and semi dangerous activities.
It feels to me you would rather give up and give in to the AVM.
Also, so many people jump on the “natural” food and supplements bandwagon. Then they find out these did not help, or actually hurt, them. What is “natural” anyway? These things are still produced by a corporation out to make money off of people. People are gullible and believe what they want to, based on no research, just on what other people tell them.
Be careful because you have a long and possibly healthy life ahead of you.
I'd rather do the natural route myself.I haven't felt "normal" since I started taking keppra and some other med for blood flow. As far as the FDA, I don't trust them anyway. They approve meds w/ possible side effects that are worse than the illness their treating. Not to mention lawsuits regarding approved meds that later are found to be not safe. It's a government agency. Need i say more? If you find out anything , let me know! I too, will pray for you!
Know that Dani is not "giving in". She is a very determined girl that knows better than anyone else that she in not invincible. Letting her AVM define her is not the answer either. And believe that it's not like she is going to a "natural" supplement bandwagon. She is talking about living a healthy life and eating less overly processed junk. And she knows her head and how she feels better than anyone else and if she says that she felt better before the doctors started handing different drugs to her every other month, I believe her and support her decision. Her AVM is fed from both her carotid and vertebral arteries on her right side with deep drainage into her straight sinus and vein of galen. She is inoperable...She knows what can happen if she develops a bleed, but is not going to live in fear everyday. That is hard for a kid to put into words sometimes. Sometimes, this support group feels more judgemental than supportiive.
Thank you for your comment! You are so right when you say that no AVM is the same. Everyone has a right to choose how they treat or don't treat. It would be great if we all had all of the answers, but the brain is still one of our great mysteries in life. It would be good if we could all give feedback without trying to push people thinking that one way is the only way. :)
I agree with you, Beansy---going off meds for the purpose of "going natural" isn't always prudent. There is such controversy over what's natal and what isn't that I think you truly have to be careful. People are gullible and we see it every day. People paying all kind of $$$ for things that are supposed to be natural and aren't. Natural isn't always better. Be careful and do your research.
It goes without saying that we should all try to live as healthy as we can, especially those of us who are diseased or with malformations. This is nothing novel or nothing new here. However, certain conditions need certain, proven medications and we should be particularly cautious not to trigger something we can't deal with if medication will help.