Advice needed please

Hi everyone.

This morning I was told by my GP that I have an AVM, so having recovered from the shock and somewhat relieved that a reason has been found for my debilitating headaches, I now have to tell my young adult children and my elderly mother.

As a health professional myself (but never having come across AVM)... I 'googled'.

So i'm now left unsure as to how brutally honest with them all???

Any thoughts/advice please

It’s easiest not to use a lot of medical terms they might be scared or confused by and to tell the truth.

The fact is, they’ll be just as scared as you and they will also Google it to better understand it or to help.

If you leave important information out it will only scare them more when they find what they find on the web.

I think uncertainty can be scary. Perhaps a good approach is to know what your plan of treatment and recovery will be. It is more comforting to know when and how your doctors will care for you. When you tell your mother and kids, it won't be as frightening, because you've already figured out how you can deal with it?

Hi Becky. Tell them we have almost 7000 Survivors on this site! Not victims but Survivors! You are in what I call the OMG…this cannot be happening to me phase. Perfectly natural. Be thankful you found it before a major bleed. We will be here for you!!

Thank you Melissa, echo and Barbara so much for your speedy responses and suggestions. And yes I am still thinking OMG. I need to keep my positive head one and get through this. I cant thank you enough for your immediate help and support.

I would be straight and totally honest. It isn't easy to tell people you have an AVM. That is one reason why this site is so brilliant - we all understand where others are coming from. Your family may never have heard of an AVM. But they do know you have been suffering from headaches and presumably that you were undergoing investigation. My own family were shocked but very supportive when they found out. Reassure them also that although it is a serious condition it isn't always life-threatening. Most, if not all, people with AVMs were born with them. Its just that they took a while to show themselves. AVMs have also been found during postmortems and they never caused any problems at all. Good luck to you.

Be honest. Let them know how lucky you are (like I was) that this was almost accidentally found when you went in for headaches rather than after a bleed happens. Stay positive.

I believe honest is the best. My husband and kids found out when I had the bleed.So if you can explain what you have and what your options are to resolve your AVM that might make it easier. My kids were 20 and 16. They have been great as well as my husband who has been my rock! We told my brother and sister as things were happening they would tell my mom.We were living in London, England when all this happened.
It’s always a personal decision. Prayers to you.Feel free to send me a message if I can help.

Lulu and Ans4102 again thank you so much for your speedy replies. You guys all really know how to support each other. Looks like i'm going to be a regular here. Thanks so much everyone x

Truth and education about AVMs is a big thing for family and yourself. Your remaining positive if a HUGH help to everyone in your family.

Funny that you said you are in health care…I have had so many Drs,residents and nurses excuse themselves…so that they could look-up AVM!
I was misdiagnosed for over 5 years and then initially told I had a cancerous necrotic tumor…when they finally decided to do a CT and then an MRI…and then came back with AVM…I too had been suffering with severe headaches and constant back and forth swelling that was spreading…my AVM is located at the base of my tongue. I believe my family was somewhat relieved to finally have a correct diagnoses and possible treatments…they all looked it up and wrote down questions that I brought to my Dr. Appts. I think knowledge helps to cope with the symptoms and side affects from treatments…wishing you the best of luck and a return to good health!

Hi Becky ! I’d like to be honest with you if thats okay…
I’ll be short and blunt.
When i got diagnosed ( soon to be 5yrs. ) i was shocked as well, probably just as much as anyone in this community who came across the “lifechanging” news of having an AVM. Frankly i did not even understand, comprenhend or grasp the medical description of this rare disease myself… (Back in the day that is. Now its not the case.)
Long story short, 5 years ago i not only underestimated the my diagnosis and what i was told by the doctors. Way worse! I carelessly went on with my life not wanting to burden myself with having to decide what lifesaving type of intervention and surgery i have choose, that was going to have to take place in the near future…
What i want to say is that i simply did not want to accept this horrible fact, let alone telling the very news to my family and friends…! They would have been devastated and shocked too, so i decided not to share it with peo

…people that i loved. Anyways , i kept my secret for a while and looking back at the situation now… Id say i did the wrooong thing!

These are all great replies. It is hard to tell loved ones that you have an AVM, but it is what is and their support can be extremely helpful to your journey. Yes this site is an awesome one and it has been my experience that all the members here will be supportive and help you maintain a positive attitude as well. Sooooo glad you found this site. Both the support of your loved ones as well as a positive attitude has proven to be critical on this journey. I don't know all the details of your situation but hang in there, we got your back ;)

Why? There are a number of different reasons… Which i dont want to get into for now, but im sure that i regreted that full year where i kept it from my environment because now, today im 5 yrs in, and it has been the living hell in some ways, meaning not even to this day to my family friends and relatives fully understand this whole mess. They underestimate the danger of it themselves.

Becky...First, I just love this Network the way they help each other so quickly!

When I was diagnosed, I only told my daughter and one of my sisters. Both of them where there for me with every neurosurgeon appointment and then with me when I went through the radiation.

However, when I had the rupture, the rest of my family had no idea what to do...they did not know I had an AVM. They were shocked. The sister who knew was living in Florida and it took time for her to fly home. My daughter was so overwhelmed, she didn't know what to do.

Therefore, I think it would be best to let your children and siblings know so they can become educated. Your Mom? You may feel that it will put too much stress on her.

Stay Strong & Positive, Becky and always know we are here to support you.

I'm for brutally honest, but then that's just me. My family was with me when the doctor came in and told me what they had found. I was in an emergency room thinking that I had just had a stroke... good news... no stroke... bad news... AVM. Never heard of it and didn't realize the peril. Bad news just got worse from there, and they (the doc's)were always brutally honest with me.

I will say this... if it had not been for AVM support group and my wife, I think I'd be dead today. I don't know who your doctor is, and I would be glad to talk to you about it, but if I had taken my first Dr's advice, again, I believe I would be dead.

Best advice I received was "don't stay local because it's convenient"... my locals gave me no hope, and I traveled from St. Louis to Phoenix to get the right doctor. AVM's are rare, find a guy that does AVM's. Dr. Robert Spetzler at Barrows in St. Joes Hospital, Phoenix SAVED MY LIFE.

I did not tell my elderly father as he would be very upset, not knowing AVM from ketchup. Opted to wait until I absolutely had to. My children, in their 20’s, were obviously concerned, but I gave them websites so they could understand more.

I just realized i cant be short with this one:)) haha
– if was to give you an advise, id say you should tell everything to your family, your children, and even your friends outside of the family. I know that its superhard and u might be thinking, you dont wanna hurt them or make them confused… But you have to understand the following : You are entering a new kind of period in your life , where a journey has started. And this journey will hold little battles for you and unexpected little complications and surprises. So it would be wise not trying to fight this alone because im telling you; i dont want to scare you and i have full sypathy with you but one thing im truly certain of is that it wont be easy, in fact it will be very hard!

hi becky, sorry to have to welcome you to the avm club! my dad was with me when i got my diagnosis and i remember us both being scared but knowing nothing about them. i think you just have to tell them the facts and explain it the best you can. it'll be scary for them however they hear it but once its sunk in and they understand whats happening you can all support each other coz i think at times my family found it harder than i did as i tried to be positive. good luck becky, however you do it will be right for you.