I don't know any other people with ACM personally, everyone I know is from online resources like this one.
But I did accidentally meet one at my daughters high school play. I was standing in line behind a teen boy and I noticed the 'zipper' scar on his head and had to ask him-- yep, he had Chiari. Just had his surgery a few months before I met him. He was surprised to meet another person who had Chiari too. I didn't get his name or anything, so I have no idea how he is doing now but it was cool meeting another person who dealt with the same thing.
Just wondering if anyone else has come across other Chiarians in their lives?
This is a great topic. I do not know any Chiarians personally and I have never met anyone. I wish I did so we could get a coffee and laugh and cry together. Talk about our personal experiences with CM. It is difficult for me to type my thoughts because I have memory issues and cloudy thinking. No one knows what it is like having CM unless they have it. I am on the support group pages for hours trying to feel like I am not alone. I get my daily cry reading about other people feeling the same affects I do. I can relate to you! You do feel the same pains I do! There is a lot of emotional factors that I cannot explain. Thank you to everyone for the encouragement and support.
That is exactly what I thought it would be meeting others who understand! I do look forward to speaking to a fellow Chiarian!
Emmaline said:
=)
A few of us from NY met up one day last summer. It's better than owning gold....having another Chiarian in your life. It is SO reassuring, and affirming to meet others that are like you. They know so much better how you feel, and sometimes you don't have to say a word...they just know.
I highly recommend it. You can see if there are any people in your area, and if so go meet for coffee or lunch. You can hook up with others by checking in your state in Ben's friends group, or others on FB.
Fyi, anyone can go to meetup.com and start any support group they want, I am the co owner of a support group (not cm related) you can pick when and where, you can make flyers to advertise etc, I will tell you now that it takes patience as it has been over a year and we on average get 4 people to attend even though we have more than 30 members. It just takes awhile to get it going.
That is so awesome, I can imagine it would be really nice. My family and friends are very sympathetic and supportive but they really don't understand it from the inside, kwim?
On the inside, I'm screaming "I don't want sympathy, I want someone to understand!"
Emmaline said:
=)
A few of us from NY met up one day last summer. It's better than owning gold....having another Chiarian in your life. It is SO reassuring, and affirming to meet others that are like you. They know so much better how you feel, and sometimes you don't have to say a word...they just know.
I highly recommend it. You can see if there are any people in your area, and if so go meet for coffee or lunch. You can hook up with others by checking in your state in Ben's friends group, or others on FB.
I totally understand what you are saying, I feel the same way....searching the net for someone else who understands!
Crisker said:
Wendy,
This is a great topic. I do not know any Chiarians personally and I have never met anyone. I wish I did so we could get a coffee and laugh and cry together. Talk about our personal experiences with CM. It is difficult for me to type my thoughts because I have memory issues and cloudy thinking. No one knows what it is like having CM unless they have it. I am on the support group pages for hours trying to feel like I am not alone. I get my daily cry reading about other people feeling the same affects I do. I can relate to you! You do feel the same pains I do! There is a lot of emotional factors that I cannot explain. Thank you to everyone for the encouragement and support.
(I'm still considered a borderline case so not sure if I count in this) A long term customer of mine had buzzed his hair this past summer and I saw the scar when he turned around to leave. I said Chiari with his back turned to me. He stopped turned around and said "what did you say???" I repeated myself and he was stunned. He said no ones ever said that or had the foggiest clue when I tell them. He told me all about it. He said his decompression was back in the late 90's and one day out of the blue it hit and he had lost his bearings... Next thing he knew he was having surgery.
At the end of summer he came back in to tell me he was on FMLA due to an incident at work. He explained that hes a on a life lite crew and had a seizure (not at work). Needless to say he was off work for a while and I havent scene him since. I felt bad. I had asked him a zillion questions the day I saw the scar and he told me how after he healed he never had any issues nor looked back. Then boom out of nowhere he has a seizure!
I worked in the ICU and left my job due to Chiari. A few months after surgery I was visiting a patient in the ICU and the nurse (a former co-worker) and I started talking about my surgery. It turns out that she also has Chiari! Her symptoms were just starting to get frustrating she said. They had found it when she had meningitis. I haven't seen her since but it was nice to be able to explain everything to her. I feel that I helped her in a small way. I know that I would have liked to have that talk with someone early on in my diagnosis.
It have found great friends on here and on ASAP's local (for me) facebook page. It is so nice to have someone that understands. I have not found anyone really close to me yet. It would be wonderful to find someone within 15 miles or so to meet up with for coffee etc. every now and then. It is a lonely life, one of pain and depression. I have found that I have to constantly give myself pep talks. Lol, that and this forum are the only things that keep me sane :)
My MIL's coworker has chiari. We met for dinner before my surgery so I'd know what to expect! It's nice to have someone local who has a similar story. Her surgery was much, much rougher than mine though. In fact it almost scared me away from having it done!!! I'm just glad I chose a different doctor!
My husband was working on a computer for a girl who had just got diagnosed. He gave her my phone # in case she had questions but she's not called. I've also recently heard that a former co-workers son has been diagnosed. Small world!
I know 5 people that work at my same company with Chiari. My neighbor who also took care of my youngest daughter has Chiari. I know about 20 people locally with Chiari and we don't have a support group or anything.
It seems kinda odd to me to not have met any anyone with Chiari but we all have different experiences.
I feel like I’ve waited over 20 years to find someone who is like me! I’m on a hunt for other CM/Syringo survivors! I feel so alone with my symptoms. It’s just easier to “pretend to feel fine” than to explain how I feel to others. I don’t want to be a Debbie Downer for anyone but sometimes I would l love to tell people the truth about my symptoms. I want to tell them, " I sometimes hurt so bad that I’m not interested in what you are saying! I am sick of the burns and cuts I discover because I can’t feel anything with my hands. I am embarrassed by my inappropriate gagging. I am tired of trying to hide my staggering and clumsy walk. I don’t want to pretend to be happy all the time to make others feel comfortable." Yada yada yada… I sure could use some support. : )
My mom has Chiari, but she's the only other person I've known until today. I just found out that a girl I went to high school with has it. Such a small world.
Beeba, I'm in Amarillo, TX. We all don't see the same doctor. My kids and husband said I know so many because I will talk to anyone. :) After reading all of your responses, I'm wondering if we have few radiologists that are good about reading the MRIs. I would hope that it is not an environmental thing. We do live close to a nuclear disarmament plant. My local NL didn't think chiari could cause all my symptoms. All of the chiarians I know are at different places with chiari. Some are symptom free, some have had surgery, some are at the wait and see point.
Diana
Beeba said:
Diana - where do you live???? This seems really strange to me. That is an extraordinary number of people. Do they all go to the same dr?
I am a RN in a pediatric hospital, I work in the presurgical/post surgical area. I have met various kiddos with Chiari, as I always go introduce myself to the kiddo and the family. Their eyes light up when they realize we have the same diagnosis. However, one girl stole my heart, I was able to see her prior to surgery then I visited her after she got out of ICU. We are now friends on FB and SHE is cheering ME on as I count down the days to surgery. (there are 6 days left)..She turned out to be more of a blessing to me than I to her...it is so nice to meet others with the same thing..there is a knowing that passes between you that says.."I've lived your battle..and I too have survived."
My NS....will only read his patients films. He doesn't even consider the Radiologist reports. He has been a NS for 50+years and says he is more experienced. He did tell me if I had to have tests done to request a Neuro Radiologist. Diana Smirl said:
Beeba, I'm in Amarillo, TX. We all don't see the same doctor. My kids and husband said I know so many because I will talk to anyone. :) After reading all of your responses, I'm wondering if we have few radiologists that are good about reading the MRIs. I would hope that it is not an environmental thing. We do live close to a nuclear disarmament plant. My local NL didn't think chiari could cause all my symptoms. All of the chiarians I know are at different places with chiari. Some are symptom free, some have had surgery, some are at the wait and see point.
Diana
Beeba said:
Diana - where do you live???? This seems really strange to me. That is an extraordinary number of people. Do they all go to the same dr?