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 Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your
life and your family's life, or how being here has changed how you cope with your rare disease. 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.
This website has meant a lot to me listening to people who have experienced what I have. This is the only website that has helped me through my ruptured aneurysm.
Without this site I don’t know how I would of coped it has comfort me all the way though and made me feel so much better in myself as I was so scared after my reputured a year ago , and the help and surport of everyone has been great , thank you xx
I live with an inoperable Giant Basilar Tip aneurysm (which I “lovingly” refer to as my death sentence!). Had I not been given the opportunity to be a part of this remarkable website, I would have given up a long time ago! But listening to others and the struggles they’re going through, somehow makes me feel stronger, and more driven to (God willing) be that one individual who will miraculously “beat the odds” !
This site is important to the care givers as well. It has provided support and a venue to help others. Shared experiences both good and not so good help to encourage and provide invaluable wealth of resources and support.
This website has been very informative and helpful. I have had two craniotomies to clip 3 unruptured aneursyms. It has helped me realize what a great recovery I am having and how blessed I am for mine not to have ruptured.
This site has been an invaluable source of information, comfort and strength for the past eight months as my husband has coped with rupture, repair, infections, complications, more surgery and now rehab. Thank you for being there!
I feel so strange…this is not right…PAIN…OMG I think this is it…so this is how my story is gonna end…do they know how much I love them?
…huh, what, can I grip that, follow this, push down, pull up?..huh, what, grip, follow, push, pull…grip, follow, push, pull…where am I? Got to get home…grip this, follow that, push down, pull up…now can I go home?
Home! …Okay what? How? Who me? Really? What is that? Now what?..ALONE, LOST, SCARED, CONFUSED…Google…Google…Google…BAF!
this website has helped me tremendously. i felt alone but soon realized others were affected worse than i. so many offered strength when i felt weak. i felt encouraged and understood. everyone has a different story. 16 months ago i was airlifted to st.michaels hospital in toronto with a 25mm (2.5cm) giant aneurysm filling my sinus cavity and bulging my left eye. i have remaining deficits to deal with. the miracle worker neurosurgeons saved my life by inserting a bypass stent through my carotid artery. the aneurysm is gone, dried up and dispersed out my spinal fluid. i look normal to most people but i feel off. there is an imbalance in my head and i see double alot. i am alive and i appreciate life. i am glad this site has been available to accept me when things were so new and different. thanks.
Coming to the Brain Aneurysm Support Group, I was welcomed and encouraged to stay by Ben’s Friends Moderators. If it was not for those individuals, I would have thought online support groups are not for me. But change was happening through their hard work. This site has become supportive and informative without demeaning. Through my recovery of a level 3 SAH and the angiograms that follow, members at the BAS Group have not only given me support, knowledge, and shared experience, they have made a place for me to continue to help others. A gift I can only try to repay.
I did very little research when my unruptured aneurysm was discovered in July 2013. Truly unbelievable since I am a fanatic for research and planning...to a fault. But I knew nothing about aneurysms other than it being an allusive term tossed out at funerals in hushed tones. I figured I was dead so why research. Physical recovery is an expectation. What I didn't account for was the mental recovery. How the brain suddenly feels like a stranger residing in your head. The fact that not only do you rely on the support of those around you, but your own support is crucial to your recovery.
I found this website accidentally during a particularly hard moment. I found genuine support, sharing, guidance...from those who understood this 'new language'. Due to some censorship last year, there were some changes that altered the forum's environment. The forum acts as a beacon of light to those whose lives are changed with that dreaded word. During recovery we're lost, we're trying to find new meaning amongst the emotional rubble. We reach deep down and grasp for a lifeline. For some it's religion, people, forums, pets. We struggle to understand a brain that suddenly feels like it's working against us. To then have a support forum censor ones thoughts seemed ironic. But it's all a part of growth.
The best thing about this forum is the support. The Moderators genuinely care for those they seek to help. The atmosphere is upbeat, you leave here feeling hopeful. Thank you for being there in the darkness.
I am relatively new to this site, having joined just this Spring. This site could well have saved my life!
Prior to joining the site, I was under watchful monitoring of a small aneurysm for four years under the supervision of local neurosurgeon's guidance in Maryland. I found this site through a Google search, and learned that the location of the aneurysm is as important as the size. Members strongly advised that I get a second opinion from an expert on aneurysms. Based on the advice from several vascular neurosurgeons and a lot of research and advice from site members, I got my clipping in August. I cannot express just how comforting and informative this site was in my time of need. I was a nervous wreck before my clipping, and it was the outpouring of amazing advice and support that helped to get me through the days and weeks before my surgery. I printed out all the advice I got and would read it over several times a day. Even after the clipping, I searched for answers to the weird things that I felt during my recovery. I went from a neophyte to an expert. I find myself now providing advice to others who are in the same position I was just a few months ago.
I have found this site to be amazingly supportive and informative. I feel a kinship with strangers who I have never met. I don't feel so alone in my journey. My heartfelt thanks to Ben's Friends for support this wonderful site!
I have been on this site for more years than I know. It was a special place for me to come to, to vent and find some like me. I have many stories to tell. But my story changed on July 20, 2015. I have 8 brain aneurysms which is 3 more than before. i wonder what God needs me to do. But until i do what that mission. is. I will walk on. Baf has been a wonderful place for me to come, and meet others that needs someone to talk to. I also known until. My time is done, maybe i can touch or help someone else along the way.
xx