Our stories are important. Will you share yours?

AVM Survivors (Ben’s Friends) is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what AVM Survivors has meant to you!

In your post, we’d love to hear a bit about your story: how you were welcomed, what the support of your peers did for you, how AVM Survivors (Ben’s Friends) has made a difference in youlife and your family’s life, or how being here has changed how you cope with your condition. Or anything else you can think of!

It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.

Your turn! What has AVM Survivors meant to you?

I’ll never forget the sense of amazement when I was greeted by multiple members on AVM Survivors, after feeling like I was the only one with an AVM. I got a second opinion after reading about it here, and it changed my whole perspective on my condition. Knowledge is power, and AVM Survivors helped to put me in control over my AVM.

As I became a moderator, I find it helps me even more as I assist others. The sense of fulfillment is fantastic, and it reminds me of how far I’ve come in a relatively short period of time. Thanks, Ben’s Friends, for giving me the opportunity to assist others as I continue to learn. I truly appreciate it!

Tim,

I'm not an AVM patient/survivor but my youngest daughter, now 15, is. She just underwent her second embolization in NYC, we live in south GA. Her first was at same hospital/doctor about 3 years ago. It took us at least a year to get proper diagnosis, this site was and is most helpful through the process for all of us. I've tried to offer what I could a couple times on the parents site with people with kids who just got diagnosed. I hope GOD blesses each & every person here.

Thanks, Chey’s Dad. That’s the kind of spirit that makes this site so special. Thanks for sharing.

Who’s next? :slight_smile:

I had my cm in my brainstem in December of last year. This site has been a source of support and encouragement in a world that is largely oblivious to our struggles. This is the only support group I have found and I am glad that you all are here.

It's a great source of support. It helps me to help others.

I was researching AVM’s online prior to and after my surgery and stumbled across this site…it has given me so much more insight into AVMers and to know I wasn’t alone helped me soooo much on its own…I’ve asked several questions and been involved in so many conversations here it helps to get opinions from ppl who live with it and know first hand what life is like…I’ve never looked back and owe this site so much for what it has done to help me through tough times…I love helping others who are new here cause I know how much of an impact it has…nothing better and would be lost without this place…God bless!

Hi all,
I am AVM Sandy and I have been a member for quite some time now. I've been an AVM survivor since 2001.
I was in search of a support site when I found Ben's Friends. I had belonged to another site that closed and was in need of friends to talk to for support.
I am one of the lucky ones that does not have too many deficits, but still needs to be online to help the ones that need me!!
I am on here for your support! I realized several years ago that God had a mission for me and that is why he kept me on this wonderful planet and that was to help others.
I have been called an angel from God by many and I hold that title at the hospital that I volunteer in, as well. I have so much love and compassion to give and quite a bit of knowledge on this subject since my crainiotomy. I was saved by a fabulous neurosurgeon in Denver, Colorado and I saw my calling when I went to work in short term rehab center several years later.
This site has helped me to touch base with some of people who need support and a loving, caring person to talk to, to vent to, or just a loving, caring conversation.
Thank you for being here for all of us in need.

When I was diagnosed with my Pelvic AVM the most difficult part was having a condition that was so rare few people,if any, had even heard of it. I felt isolated and so alone. It wasn't until I had endured several years of treatment that I found this site. And it is a God send! Thankfully I am well and have been able to chat with others with Pelvic AVMs on this site. Hopefully my insight and sharing of my experience brought them peace and strength in their journey.

What a great idea! 10 years ago my AVM was the source of a major stroke. I do a monthly post on a wordpress site (https://evangelineuribe.wordpress.com). I have learned heaps about AVMs from this site -- including the fact that we are very special being AVM Survivors! We are not alone. It's been great for networking and the whole idea of belonging.

I had my AVM stroke 1/6/2010 here in Francei wrote 3 kindle books about my experience all royalties go to Arni Institute in England directly helping stroke survivors

Howdy,
I'm a Temporal-Parietal lobe AVM, with resulting Epilepsy survivor over 4 years now. The AVM was discovered after it hemorrhaged. Of course I had friends and family to talk to about how I was feeling but I had never known anyone else with an AVM, so I turned to the Internet in hopes of finding others like me; That's when I found avmsurvivors.org.On this site I've met countless of others that are familiar with my experience. I've found support and knowledge beyond what clinicians have shared with me.

am fighting with doing more exercise and possibly getting some abilities back faster ( I have seen the improvement) vs not doing as much and moving on with other parts of my life. All of my strokes have been in the cerebellum , so directly to do with motor coordination. I am currently in the wheelchair and re-learning to walk with a walker independently. I am currently 25. I am currently living in a house where it is necessary for me to have family help to get in and out. Because of lack of ramps. I appreciate that they are there for me, I miss being independent very much. I am in contact with a guy a little bit younger than me who had a traumatic brain injury , and he seems sometimes like he does more exercises to help him recover than me but I did more at the very beginning also so I'm not sure. I am fighting emotional health. I am also researching more about seasonal affective disorder. For a quick overview, I had my first stroke over 2 years ago , I have had 4. With my first recovery I was walking with a cane and sometimes without anything from mostly a walker in September 2013. Then early April 2014 I entered into the wheelchair again. That was also when my speech differences came it was also when I first had problems with my right arm . On February 14th I experienced another physical setback. I was practicing independently with a quad cane. I am kind of just tired of recovering now. for my mental health I know I can't put all my energy into recovering. I am Not sure if by bettering my physical health my mental health may be helped , both directly and indirectly. I think that also depression has been sneaking up on me because my normal keeps changing. So I do not know what to look out
I forgot to add the most recent things. On early mid August I had another embolization followed by a craniotomy. Another stroke resulted and left side of my face became numb and along with that my hearing going on that side. I know I know it has been less than 3 months since but the patience I thought was abundant is being tested. I have been to physical stroke support groups and online groups, but the experiences are not the same as AVM survivors.

I am new to this website. I read all of the other replies after I replied. I found this website after my cerebral is gone I kind of wish I found it before now.

The AVM Survivors Network means a lot to me. I did not find the website until two years after my rupture and procedure. I had lost some friends during my recovery, but in turn I made some wonderful and understanding friends here. They've helped me with feeling better about myself. I turn, they taught me a lot.
Through this network, I've learned a lot about AVM's and how they differ. It also keeps my determination going to help with spreading AVM awareness.

I wrote this poem over a year ago for my AVM family to show how grateful I am for them. <3 Because of You For so long I've searched for a safe place
Some understanding, a friendly face
A place where one like me can belong
I've searched for a safe place for so long

Much much rejection I always find
When I ache for comfort in this difficult time
If I am worth loving I often question
I always find much much rejection

You come along out of the blue, out of nowhere
Among the crowd where no one seems to care
You help me to break that façade of strong
Out of the blue, out of nowhere you come along

Throughout all of my faults and flaws you loved me
You opened my heart and eyes so I can see
The person I truly am, which you always saw
You loved me throughout all of my faults and flaws

You helped me to repair my broken being
Find love for myself which was ever so freeing
I learned to see what what was truly there
My broken being you helped me to repair

My disability I am so much more than
There's many qualities I have which are grand
How can I thank you for helping me to see
I am so much more than my disability?

Because of you I have the strength to go on
In this recovery that does seem so long
Now shattered are those lies that say I'm pathetic and obtuse
I have the strength to go on because of you

© L. Wilson October 2014

AVM Survivors has been a valuable resource to me. In October of 2013, my husband's AVM, about which we knew nothing, ruptured. The doctor gave us no hope he'd make it off the operating table, then no hope he'd ever awake from coma, and then no hope that he'd ever have any functionality once he did. It's been a little over two years, and time and time again I have come to this site for some answers and encouragement. What a comfort it is to have folks who have gone through what you are going through. There is also a bit of comfort in sharing what you've learned with others who are seeking answers. My husband has improved in amazing ways, though a long way to go. Thank you for the help and support!

After my bleed things were a little hazy !, I'm not sure I remember the first week afterwards and only really remember things at the end of the 2 week stay in hospital. They couldn't remove the AVM on that visit but the life saving craniotomy was a huge success and I was thankful when on pain meds and sad when not, Like "Why did something like this happen to me !" Even on check out of hospital I didn't know what an AVM was. I was selfish in a way thinking that since it happened on Dec 31st that I missed New year celebrations with my family. When I finally got round to thinking right I need to know more about this. The AVM Survivors site was the one that looked the best via the internet search engines because of the size of the community and how active the forums are. I joined initially only for research to read about others who had right Temporal AVM's and maybe bleeds. There were so many success stories that it made me happy to come here and read other members experiences. I then started to see people that needed help or reassurances and started to reply to posts always in a positive manor, Hoping that I could share the happiness that I had gotten from the success stories here. I guess that's maybe why I was asked to be a moderator, Even in the darkest of times you should always look for the light for the hope and its this site that's taught me that. Thank you AVMSURVIVORS !.

Martin.

The stories received so far are amazing! Each one is unique, despite the fact we all share the common bond of an AVM.

Do we have others that are willing to step up and be heard? :slight_smile:

My mom was 56 when they found her cavernous angioma on her brainstem. She was told to have the gamma knife procedure done. That was her only option. 18 months later she had sudden onset of short term memory loss. It took 6 months to find out that the GK caused radiation necrosis. The doctors never once told us that was a possibility. We traveled from Tn to the Cleveland Clinic in OH to learn that there was no cure for it. She lost all life skills, memory. We had to put her in a nursing home because we, her family, could no longer care for her. We lost her in December 2014. I would never recommend radiation to anyone that has CAV on brainstem. The area is too sensitive and controls so much of the body. Prayers to everyone out there that is dealing with this terrible illness.

Life was normal and everything was fine, then on Saturday March 15th 2013, my downstairs neighbour took me to the emergency room. How a woman in her 70's can take me down 3 flights of stairs by herself, I will never know.

Anyway, 3 weeks in ICU, some more on the ward, after an emergency crainiotomy and a couple of other adventures. I have no memory of anything for 3 months. Apparently I was in a vegetative state and under the care of some great nurses and a talented neurosurgeon, Dr. Robert Ramcharan.

Lost all abilities and memories. Had to re-learn to eat, talk, walk, see, bathe, take care of myself etc. Lost my vision, and another good doctor, Dr. Das, gave me eye exercises to uncross the eyes, and very gradually vision stated to come back. Very gradually, like a year and a half. Perception was a mess, my floor was 2 feet higher that the actual floor...so I laugh now at how comical I must have looked.

It has been a very slow and long two and a half years.

About seven months after the AVM, my cousin, Ramona, helped me find Ben's Friends on the internet. I was scared stiff, confused and had no idea what was happening to me or what was an AVM. This site did 2 tremendous things for me....it took a massive amount of fear away from me, and it connected me to other survivors, where I learnt things from their experiences, and did them too.

I am so very grateful for this site! That fear was doing a huge number on me and no one knew how to help me, and I did not know how to help myself. I thought life ended when I had the AVM. This site not only gave me hope, but taught me exactly HOW to go on. Sort of pointed me forward. Yes, I am very grateful for this site, it was and is my lifeline for forward.