Our stories are important. Will you share yours?

Please tell us what being a member of Ben's Friends Chiari Online Support Group means to you:

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.

Your turn! What has Ben’s Friends meant to you?

It has meant a lot to me to be a part of this group. When I was diagnosed, I was getting no answers from my doctors and I was frightened and confused. It was nice to find others who could answer my questions and concerns. I no longer feel alone or afraid.

Ben's Friends gave me a place to find answers to many questions that doctors didn't have and friends that let me know that I wasn't alone.

This is such a rare and minuderstood condition, I can't imagine finding proper support anywhere else than here. I live in Lavia where we are only under 2 million inhabitants.

When you have an illness that has no acctual cure, the support, understanding, advice this community gives, is priceless. Being among people who can relate means the world to me. Not only this community gives the so needed emotional support, but it also provides the knowlade of what to ask of doctors, which in my opinion is extremely important.

Thanks to everyone who makes this possible!:)

Hi…my name is Roberta and I live in Columbus Ohio USA. I am 53 years old and was admitted into the hospital in March 2014 complaining of severe headaches, dizziness, nausea accompanied by extremely low blood pressure. I was given an MRI and the neurologist found the Chiari Malformation. It took me 7 months to decide if I should undergo such a surgery as they perform surgery dangerously close to your brain. In that time I soon realized that my symptoms were getting worse so I elected to have the surgery in December 2014. Today I have fully recovered but still suffer from chronic and painful headaches, experience some dizziness and my neck is always in pain. This forum is a great place to go to talk to those of us that live this crazy affliction called Chiari Malformation.

Some days I wish I could put head to rest separate from body as I think that would make it feel better. It just feels heavy! There are no other words I can think of to best describe how I feel. So I pray…I pray every morning that I won’t experience a headache that day. So my Chiari Friends, I pray that you have headache free days as well. God Bless!

I was diagnosed last year october 2014 with CM1, and it was surprised me that my local health care professionals were not aware about this mechanical issue at all, but they are very excellent in trying to support me..i tried to contact Ann conroy and also brain and spinal cord organisation..eventhough they are very helpful i can't find any useful to share the expreince from aother members, i was lucky enough whilest looking at the website i found this Ben's friend where i registered as a members, they welcome me with a friendly manner and most importantly there members are very helpful with giving me tips of their experiences and share their best practices, without them i was really scare and now i am confident and know what to ask when i go to my second opinion and also very sure that I would like to have my Op. as before i was so confuse what to do as despite of their expertise the Ann Conroy trust was unable to give me unbiased opinion. So, i will recommend any one who are suffering of this kind or have a families/friends who are in similar position to join this site.

I was just recently diagnosed with chiari 1, but have had symptoms for 6 years. All from headaches, memory loss, blurred vision Nausea, dizziness ,balance and coordination skills , muscle and joint pain. The fatigue I think has got to be the absolute worst. I can't seem to keep up with out fighting hard. I have 4 children and am a single mom. I have come to a point where I feel like I have become a disappoint and a headache to them. I try not to complain or ask for to much help.I want them to be able to live life to the fullest. Not carry the burden off my illnesses. My diagnosis's are graves disease, fibromyalgia, Raynaud's disease. And so much more. But my reason for joining this group is because after reading about chari. And thatbibwant to learn more bout chiari and ways to get through.I am starting to wonder how I have went this long being mis diagnosed. Still trying to put it all together. Anyone feel the same? I know this sounds crazy but as many different diseases as I have been diagnosed with, I am so praying that I can gain some relief of this 6 year rollercoaster ride. I don't know upnfrom down , or left from right. Anyways thanks for having me and reading my "short" story lol. All advice/questions/or comments welcome.

Hello, Members. Our apologies for any confusion. We’d like to preserve discussion here exclusively for the topic of sharing personal testimonies regarding the impact of Ben’s Friends communities on your lives. Please feel free to start a discussion in any of our categories if you’d like to discuss other topics. We thank you for understanding.

Chiari Mod Team

Thanks for the fellowship Bens friends.

I’m a 54yr old man now but I’ve suffered from this rare condition all my life from screaming headaches as a child and Mom would rush me to Er at Doctors Hospital North in Columbus Ohio or Children’s Hospital and no solution trouble concentrating in class held back in 3rd grade school and Doctor sent me for brain waves scan but no information back then on condition I found out I had in 2005 after I was grown with Wife and Children of my own and now in my forty still having headaches blurry vision with unbalance and planter flatulitis in feet memory issues weakness and bad fatigue was going before dyagnosis to Doctors to see why I was having issues when dyagnosis I thought finally a name for it but I was so wrong this was in Huntington West Virginia after seeing a Neurologist and then Neurosurgeon and both acted like this is nothing I thought there was something wrong with me and gave up on looking for answers then moved to South Carolina thought after I seen new GP that I would see what a Neurosurgeon here thought about my situation after having my Wife tell the Doctor about our situation together he orders MRI no Contrast and finds Chiari but Also a herniated disc at C3 and C4 and seems more concerned for the herniated disc then talking about solutions to the Chiari I asked him what he thought of how big the herniation was his reply it does not matter about the size well do therapy on disc first and go from there still Chiari is not at the forefront still so misunderstood years later I’m afraid I’m in for another disappointment in care but I’m giving him benifit of doubt and see I’ll post my journey through this very difficult road to respect of illness and treatment from Doctor from MUSC Dr. Patel wish me luck I believe I’ll need it…But pray not…

I joint this support group in the first half of May 2014, and I was warmly welcomed by several members. This group has been very helpful to me at times, whether it's provider recommendations or just some friendly advice. I've also been able to be helpful to others myself with some things, and I love that aspect of this group; the way we can all help each other is tremendous. It makes this journey a lot easier when I can reach out to others going thru the same ordeal as I am, because you all understand first-hand what all this feels like. My activity here has been sporadic as of late, but I'm thankful to know that there's somewhere I can go when I need to, or even if I just want to see what's new with everyone.

This group has given me support and motivation during a time when I was scared and newly diagnosed, felt very alone and nowhere to turn to— as so many people, even in the healthy cafe field lack knowledge about Chiari. It’s great to have the continued support during this challenging journey in our lives & even getting suggestions regarding special pillows and suggestions to make certain changes to daily routines to make the symptoms a little more managable has really given me hope and relief. I’m grateful for this group of caring helpful people. Thank you.

this website has been amazing. when i felt allown and thought no one understood what i was going though i found this website. as right before i had my first decompression surgery and was going crazy with worry the people here helped me aurora for it and answered all of my questions.