OMG YES! You are going to need support...more than what you will find here. And you will want to be able to discuss your situation with those that you love and that love you back.
Again im sorry but thats just me. Hope all goes well ! Be strong and think everything through before you come to a decision…
It would be nice if you let me know how things went because i have been there too, and im sure many others have had to deal with similar dilemmas.
GOD BLESS YOU! - milan -
I would do my research first, what is it? How does it generally affect people? Survival rate? All of these things. Find out as much about your AVM as you can. Where is it located? What is it's size? How is it rated on the Spetzler-Martin grading system? What type of damage has been associated with ruptures in that area? And what is average recovery time post-bleed for ruptures in that area? Then find out treatment options. Gamma knife/ SKS? Embolization? Craniotomy? Answers to these questions will help you as well as your family. The more you know and can present to them offhand will help ease any worries. I would also find a way to explain it in plain english, make it less confusing.
Well maybe start with the good news.The reason for the headaches has been diagnosed and the fact that it can be treated.
Becky,
It is good that you have already reached out to understand your condition and meet others that can identify with your AVM journey. Your family will also be a vital part of your support structure. I can hear it in your voice that you are worried about them. It is hard when roles switch and suddenly you will be the one needing support.
Just be honest. Tell them what you know. Since it seems like you are just beginning this process, you will probably need to see an AVM specialist before you will be able to go into much detail as to what will happen next. There is a lot of info here and other places on the internet. There are all types of AVMs and many different treatments. Each have different challenges, timelines and outcomes. Some choose not to treat their AVM and instead go for symptomatic relief and monitoring over the years!
Let your family know that you will need their support. Encourage them to join this forum as well.
you might wish to look up results from a recent clinical trial.
http://www.ncbi.nlm.nih.gov/pubmed/24268105
I would first suggest getting facts from neurosurgeons for you to have a better understanding of your AVM grade, treatment options etc...AVM's come in all shapes and sizes, treatable non treatable etc. You will be better equipped to share the facts once you have a better picture of how potentially serious the condition is. Then I would suggest that you tell it to them straight, like dragnet - stick to the facts with what you have and what the treatment options are for you - try to stay optimistic. Medical treatments are truly remarkable today and there is much hope for most people who have discovered an AVM. In some ways I would call you 'fortunate' for knowing ahead, there will be challenges ahead but, with a good support system, you will find that through this challenging time you may find yourself closer then you ever been before to the nearest and dearest. My best wishes for you to have a curable treatment soon, so that you can get back to your regular life....
Hi Becky,
I completely understand what you are going through. We just arrived home from the hospital less than a week ago with our 12 year old daughter who is recovering from her craniotomy after having her AVM removed. She also was suffering from frequent and intense headaches which led to an MRI and the discovery of an AVM. We had never heard of an AVM before when she was diagnosed. That was just over one month ago. In our experience, you need to let your family know right away and you need to get into your neurologist as soon as possible. He or she will be bale to give you so much more information that is relevant to your particular AVM. We have learned that an AVM is not an AVM, if you know what I mean. The size, location, and other factors make a huge bearing on what you are dealing with and how it is to be treated. Only your neurologist can give you the specifics of your situation. You will be surprised at the support you receive! Take it. Right now, you need it and deserve it.
Let me also say that, like us, you are so fortunate to have found this before it ruptured. According to the doctors and nurses in the hospital, the difference between being able to treat it beforehand vs. having to try and repair things after a rupture are incredibly different. Consider those headaches a blessing!!! Keep educating yourself, Becky, and my prayers are with you. If you have any questions I can help you with, I would be glad to help. Feel free to let me know.
We have a lot of younger kids in our family. When they or even other adults over hear a conversation and ask what our son has, we tell them all he has tangled blood vessels is his brain. Maybe that’s a way to tell your mom. It is a hole late to take in all at once, and something that as a parent I never stop worrying about. Every headache is scary. I could not even imagine if my child were an adult child with a family and kids.
Hello, Becky1996
I echo Melissa when I say you are best off to share truthfully without embellishing. Once they hit Google, they'll have plenty to sift through. You are so very fortunate to have a doctor who discovered it before a bleed! Follow your doctor's orders and allow yourself to be nurtured by your family.They will be very tempted to go overboard and perhaps treat you as if you are fragile. Try to take this in stride. They are probably just scared of the unknown. So, when you talk to them, assure them that you are ok but that you will let them know if you need help.
Best wishes -
This discovery is definitely a little bit scary, even more so when you hadn't even heard of an AVM (I had to Google it too!)
In my opinion, I wouldn't normally tell family members about a medical diagnosis (unless it was a terminal illness) for obvious reasons.
But in the case of a brain AVM, I'd break the news to them. I'd let them know that there is absolutely nothing to worry about and that you are going to be fine, you just have to avoid certain things so as to limit the chances of a problem ever occurring such as trauma to the head. i'm not assuming you live near Bamm-Bamm, I'm just more paranoid than most.
And you wouldn't be telling a white lie; you really will be perfectly fine.
The people who gave you advice are right, of course.
You are fortunate to know about it before it ruptured. When
mine went it was the first I knew about it, and my rupture
nearly killed me. Your neurosurgeon can decide how to
deal with it so you don't have to go through a bleed.
Best wishes for a nice long life.
The neuro at the hospital that diagnosed me said it could be considered to be a bit like a "birthmark in the brain" , and although its a lot more complicated than that, that's not a bad way to introduce the subject to others before explaining the consequences, seriousness and complexities of it all... That's how I broke it to my family. Then stress that there ARE effective treatments and that it's all very complicated and somewhat daunting, and then you can begin your journey through it all TOGETHER.
Keep your chin up, you can get through this. Peace and strength to you.
p.s., mine was found BEFORE rupturing and I had embolisations and radio surgery, around 2000-2002 and now 12-14 years on, it's still not bled. So the treatment CAN be effective.
As an AVM Survivor, I cannot imagine not being honest. An AVM is not a death sentence and knowledge is power 
I’m a true believer that knowledge is power
Has your doctor said whether or not your AVM is operable? If it’s not operable, have they given you other options in terms of how to treat it?
Hang in there! We’re all survivors here
Hi Becky. What a great post, as I am sure many other people have these same thoughts when first diagnosed. It is important to be honest with your family about your diagnosis, explaining what it means, various treatment options and once you know what your treatment plan will be, then you can share that with them as well. What has your doctor told you about your diagnosis? Perhaps your first conversation is just to let them know the reason for your headaches has been solved. Your next step is to act on this information. Tell them you need their love and support and you will always be open with them about what is happening with your AVM. If you have a good and open relationship with your kids and mom, then by all means honesty is a great idea. Good luck and let us know how your talk goes and everything after that :).
Where in the brain is your AVM located? I elected for gamma knife radiation when I turned 18 and suffered some minor side effects from it. My AVM was considered large and in a tough spot to operate on, so I would consider all of those things before making any choices. I would tell my kids and also include treatment options if you choose to discuss them so they do not feel helpless. This will give them hope. I remember being 16 when I found out and didn’t have any treatment options initially, so I would pursue it that way.
Welcome Becky1966 and happy that you found this site. Just finding out that you have an AVM comes with so many surges of emotions and a whirlwind of questions. This site, as you have experienced so far, provides you with advice, strength and support.
All I can tell you is my experience with telling my family of my AVM. Being a single mom at the time it was difficult to hear about the AVM and even more exhausting as to where to begin and how to get to the end. My parents were involved right from the beginning. My AVM was an accidental find, though it had not ruptured I was symptomatic. They were there the day I was told I have an AVM, to specialists and through treatments. My children were told in terms that they could understand that I had a condition that I have had since birth that needed to be treated, why we were treating it, what we were going to do for treatment and what we needed to be careful of.
Everyone is different in who and just how much they want to tell. My family has always been open and honest. In regards to my children, they would ask questions so they could understand and I would be honest, but not brutally honest. It was always an open discussion to them when they were comfortable and on their terms. They were introduced to doctors so they could ask questions as well. I am glad my parents and children are there. If it wasn't for their strength, understanding and support I don't think I could have come as far as I have.
You have many people here for your support. If there is anything else I can offer please just message me.
Hi Becky, As a father and person who lived with an AVM I would like to think that I understand your thought at the moment :( , It is a worrying time and I really hope you are strong for both you and everyone who needs you also :) . I just told my kids that Daddy had a sore head and that I needed to go into hospital for a small operation that would make the headaches better, But what I didn't know at the time was that the headaches are a by product of my rupture and large clot so I need to live with them, But take meds each day and now have to explain to the kids that I still get sore heads but I had my operation and my heads all better .. just gets sore sometimes. I stayed positive for everyone and this helped me stay positive for me also :) , it was hardest for me at night trying to get to sleep and having loads of worry ... but I just knew that everything would be ok. And that's just how you need to look at it. Tell everyone you'll be fine (I said it so much I really believed it ! and only faltered for about 5 seconds as they were wheeling me to the operating room for the 2nd Craniotomy in 7 months! ) . The medical guys out there are the very best at what they do .... its brain surgery after all and even if its not brain "surgery" its all relative to the same (Radiation/Embolization) At the end of the day I hope that everything will be ok and you are treated for your AVM. Take care and good luck.
Correct me if I'm wrong (that's always a possibility), but wasn't that study discontinued in 2013? The link you point out told me that.
Becky, I work in health care as well but nothing could prepare fully for the future... 13 years ago I was like you. I had 2 small kids and my regret was I did not really explain to my kids the details of what was wrong with me. Now, my kids told me that they wished they knew what was happening to me because they did not understand what was going on. They made comments like "they were just put in the plane to see me in the hospital". I remember trying to explain to them in layman's terms trying not to show my tears...and my fears. My husband was no help either. Give your kids some credit. Try to explain to them in simple terms as what others are also suggesting. I tend to be very over protective of my kids but sometimes that doesn't work. Now, both of my kids are college graduates and I think they are doing fine.
Trust in the Lord that He will deliver you safely and be with you in this ordeal. I still have some side effects from the surgery and I still take anti-seizure medication. My Md advised me to go to work as soon as possible and that's what I did. (After 6 months of physical therapy, a little bit of speech therapy as well.) Take care and hoping and praying for your health. Prissy