Question

Is there anyone out there that feels overwhelmed by this whole thing?

i want to meet up with AVM survivors and get to know them is that is possible? anything is possible with GOD :slight_smile: please let me know if u are up for it :slight_smile:

When it happened to me, definitely. I’m sure everyone who has or is very close to someone with an AVM have found the experience to be very overwhelming. I mean, it completely turns your life around.

And I’m happy to get to know anyone.

I used to feel totally overhwhelmed but after much reflection and alhtough I have some physicallying challenging days, it has been a blessing… I am so far from ‘better’ as mine cannot be treate (although I am still in search of some dr. as I don’t give up hope) but yet my life is deeper and richer in relationships. My faith has strengthed and yoga as helped me tremendously to truly live in the moment. I don’t thik drs. have all the answers as AVMs are so rare and I pray one day for all of us to be well in mind body and spirit, God Bless! xoxo Mare

My stroke was out of the blue in november and they didnt find my AVM til February and then recommended surgery. 3 months ago i was a healthy mom and working 50 hours + a week, now im exhausted, very overwhelmed and working on finding the best place for sugery for me, with the least disruption to my family. Trying to educate others about it is exhausting. Yes… Id say i very overwhelmed too!!! But i reply a ton on the great freindships I have and have decided i need to spend less time with the people in my life that really dont even try to get it. For the most part im getting good support, but it is hard for people to understand. Glas you all are here to understand it really!!

Yes completely, but it does get easier to accept - acceptance being the key! I completely agree with what Larisa says too - you soon find out who your real friends are and are so grateful for their help and support. You realise what and who is important very quickly. Those who don’t get it, or don’t want to get it or be there with you, forget them. You need strength and support from wherever you can. It’s such an overwhelming thing to be told as it completely affects all parts of your life. This has impacted on me so massively and my husband and children but i’ve found the best way to cope is to stay as positive as you can - tell yourself you’re going to get through this. I was only diagnosed in December and am awaiting surgery in the next couple of months. I’m completely terrified but focussing on it hopefully being completely removed and free of this.

Larisa Diephuis said:

My stroke was out of the blue in november and they didnt find my AVM til February and then recommended surgery. 3 months ago i was a healthy mom and working 50 hours + a week, now im exhausted, very overwhelmed and working on finding the best place for sugery for me, with the least disruption to my family. Trying to educate others about it is exhausting. Yes… Id say i very overwhelmed too!!! But i reply a ton on the great freindships I have and have decided i need to spend less time with the people in my life that really dont even try to get it. For the most part im getting good support, but it is hard for people to understand. Glas you all are here to understand it really!!

Yes, it is overwhelming. With faith and attitude anything is possible. Good luck and my prayers are with you. Keep your chin up.

Erin said:

Yes completely, but it does get easier to accept - acceptance being the key! I completely agree with what Larisa says too - you soon find out who your real friends are and are so grateful for their help and support. You realise what and who is important very quickly. Those who don’t get it, or don’t want to get it or be there with you, forget them. You need strength and support from wherever you can. It’s such an overwhelming thing to be told as it completely affects all parts of your life. This has impacted on me so massively and my husband and children but i’ve found the best way to cope is to stay as positive as you can - tell yourself you’re going to get through this. I was only diagnosed in December and am awaiting surgery in the next couple of months. I’m completely terrified but focussing on it hopefully being completely removed and free of this.

Larisa Diephuis said:
My stroke was out of the blue in november and they didnt find my AVM til February and then recommended surgery. 3 months ago i was a healthy mom and working 50 hours + a week, now im exhausted, very overwhelmed and working on finding the best place for sugery for me, with the least disruption to my family. Trying to educate others about it is exhausting. Yes… Id say i very overwhelmed too!!! But i reply a ton on the great freindships I have and have decided i need to spend less time with the people in my life that really dont even try to get it. For the most part im getting good support, but it is hard for people to understand. Glas you all are here to understand it really!!

Erika,
You’re not alone. This “thing” has completely transformed my life. If I stop sometimes and thing where I was at this same time last year and the differences I become depressed with it all but to have even asked the question and to recognize that this is an extremely overwhelming experience is a good thing. I think it means we are being honest with ourselves about what we have and what’s going on.
If you’d ever like to talk or get some stuff off of your chest dont hesitate to email me.
Take care,
jessica

My daughter’s AVM ruptured January 2009, with another resection two weeks ago. This has affected our entire family. It’s overwhelming on many levels. Some friends today reminded me to take things a day at a time when things get tough.

Hello Erika, I’ll bite…

I went through my rupture when I was eighteen years old and just a week out of graduation. I’ll tell you about my experience. I was in a coma for about a month; that whole time I was in the presence of my great-grandmother but there was a problem: She had been deceased for eight years. I was with her in her home where I grew up. When I came to, I immediately called for Grandma Ona and had to relive her dying. It was very traumatic. Here is the enlightened portion: When I “woke” up, grandma was the person who woke me: She said, “Hollie it is time to go back; you have work to do.”

That is my spiritual story; hope that helps your quest Erika:).

Hollie

I felt very overwhelmed and quite pissed off! After a while when I was able to sit and really think about things I became less angry less scared and less overwhelmed and realized the whole situation was just fine and I in the end I would be better off! Best thing is I was right! This has been the longest span in my life (6 months) that I remember not being put out of commission because of a headache. One thing I can say dear is that the feeling you feel now will change and morph into others as time wears on. Just pray they change for the better. I am alway willing to meet anyone and everyone who I share this journey with. We might not be on the same path, but I can see you on yours and everyone on theirs lets just take a few steps closer and give each other a hug a hand shake or my favorite a HIGH FIVE!!!

I think overwhealmed is an understatement. My daughter was 17 days old when the docs found her AVM in the vein of galen (back of her brain). Since then she has had 4 embolizations, and a shunt placed because she developed hudrocephalus due to complicationsfrom the AVM. Reading everyones stories have helped a lot. Just know that you are not alone in this is very comforting.

Absolutely! plus I felt like my whole life changed and I had to get used to this new life. I think there are all these different stages you work thru and you just have to let yourself feel whatever it is you are feeling each day. There’s disbelief and fear and anger and helplessness and more disbelief (IS this REALLY HAPPENING? THIS IS NOT HOW I PICTURED MY (SON’S) LIFE!!!) and then eventually, you get this huge inner strength and you’re so strong, you just amaze yourself!

AND you can feel all these things but at the same time what you MUST be is THANKFUL. You just keep finding all that stuff in your life to be thankful for and that will get you thru each day. All the best to you Erika.

I have a 13 nonth old daughter who was diagnosed with her AVM in uteri. She’s had 4 embolizations and a VP shunt placed by 10 months old. She’s been through a lot to be so little. Shes a very strong little girl and it has been VERY overwhelming! If u want to chat, I am here :slight_smile: