What can I expect?

I found out about a month ago that what was first thought to be a tumour on my cerebellum is actually an AVM. As I do not know anyone who has gone through this, I was hoping that someone can kind of tell me what I should prepare myself for. I have an angiogram soon and from there my doctor and I will discuss what to do. The AVM is about the size (and shape) of a thumb and the only symptoms I had were a couple of bouts of severe headaches. I am 23 and just began my teaching career after lucking into a full time permanent position straight out of university and my boyfriend and I are buying a house, will this discovery throw a wrench into everything?

Can anyone help me out?

Thanks!

Maryanne,...

As each individual is unique to himself/herself, each AVM is also unique to the individual. I know this doesn't answer your question but this is the reality of your AVM. Please be patient and go for your procedure/angiogram and your physicians discussion, then gather all the information you can and make the best decision for YOU.

Maryanne, your health is the paramount of importance and should have your total attention, where as everything else is secondary. Read about others here on this site, ask questions, and gain information.

There are many good souls here, all AVM survivors, and we will help you in any way we can.

William,

Hi, Maryanne,

I just found out in december i have an AVM in my right frontal lobe and its 2 main arteries that are affected. I had to put school on hold because I have alot of memory problems, and some emotional outbursts, because of the area it is in. But it hasn't totally taken my life over. I still go to work every day and deal with pain / burning sensations in my head that i have actully delt with for years before they found out what was going on. I have been through a lot of dr. appointments trying to figure out what treatment options are the best for me. Don't be afraid to ask questions and always take someone with you because it becomes quite over whelming and I am in the medical field as a nurse. It is a lot to take in. The angio is not so bad it does make you uncomfortable and in my case it was painful but i know alot of people who have had it done and didn't feel a thing. But believe them when they say you have to lay down without moving for up to six hours. I have 4 children and the only wrench this thing has thrown into is my schooling, as long as you are feeling up to i say "DO IT " I',m not the type to watch life pass me by. I hoped this has helped. There are treatment options that will let you keep working and not miss a bet. having the AVM surgically removed is the only way to my understanding will slow u down a bit. from my understanding. This site can provide u with alot of helpful information. It has helped me! And welcome . And good luck on your journey.

Thanks William and Tonna. It is really good to hear from people who are actually going through the whole thing. I was always so focused on schooling/job that I can't really get my mind off that track- I guess it's just too easy to take health for granted. So far the AVM has only affected work once, where I had a terrible headache the whole day and actually had to leave the class to vomit because of the pain. My high school students insist that I "keep them posted". I am very confident in my neurosurgeon, he is very thorough and has a great way of explaining things so that I am as comfortable with all of this as possible. I am also very grateful that I found this group- I don't have anyone close to me who really understands the whole situation.

It is unfortunate that you have symptoms every day from this, Tonna, hopefully they can resolve this quickly for you. I only had acute spurts of pain and I cannot imagine having it every day. Good luck to you too!

Hi Maryanne! You have found the perfect place to gather info from other people's experiences and to meet others going through the same things! Your AVM is smaller than mine was and mine is completely gone now!!! So, take a deep breath and try to relax! It's great for you to learn as much as you can, but you also have to stay positive and trust the Drs and their expertise. This is a scary thing and I can just share my story and what I've learned from my "AVM Journey". The short version: I had the Gamma Knife radiation treatment, took a long weekend from work, and resumed normal life after that. I had a 3 yr old daughter and life was very busy. So, there may not be any wrench-throwing at all. Alot depends on the angiogram and the size and location of the AVM. After your angiogram, they'll discuss your treatment options. Do you understand the various treatments? Let me know if you don't. Congratulations on the job, esp in this economic situation of late. My baby is now 21 and graduating this June!!!

Thanks, Kristin. This certainly gives me a lot to think about. I have only heard of surgery and the radiation treatment, I was expecting to hear all about the other treatments next week after my doctor and I discuss everything. I was, though, hoping to get an idea of what each entails so I won’t be barricaded with too much information too fast when I did speak to him (as is usually the way when you see a specialist here).

If you've not already planned to do so, plan to bring someone with you to ALL appointments, and have them take notes. Take in a list of your questions. Ask the doctor to repeat whatever you don't understand, until you are satisfied. Take your time. If your doctor isn't patient with this process, find another doctor (I know that's unsettling and stressful; but ultimately, that communication can be so reassuring).

Be careful about reading horror stories on the internet. Stick to legitmate sites (like this one appears to be, from the short time I've been on it) and don't "borrow trouble." Remember that each person's situation is very, very unique. You may have a much better experience than someone else, etc., even if you have the same physical situation.