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We are patients and survivors of Chiari (types I-IV), here for your support.
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All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
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Ben’s Friends Mobile App Launched!
We’re so proud to announce the release of the Ben’s Friends iPhone App!!! 
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In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
Rare Genomics Podcast
The first run of our podcast on genetic disorders with our partner, RareGenomics, was a resounding success! You can listen to a recording of this podcast below, plus some bonus material from Dr. Perlman as she answers more questions about ataxia!
Part 1:
Part 2:
If you have a suggestion for next time, or want to give us feedback, fill out this form!
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Forum
20 month old with Type 1 Chiari Malformation
Started by alicemay1 in General. Last reply by Honeybunch 37 minutes ago. 7 Replies 0 Likes
Hi Everyone, I am new to this support group and actually new to the world of chiari malformation. I guess I should start off by introducing myself. My name is Alycia and I have 20-month-old fraternal twin daughters. Last week my daughter was…Continue
heart to heart
Started by robin in General. Last reply by Jules0616 1 hour ago. 10 Replies 0 Likes
I am now 11 weeks post op from decompression and stenosis surgery. Physically there is still severe neck pain which I started pt again. Its funny how the physical therapist cant understand why Im not feeling better which leads me doubting once again…Continue
Input would be appreciated
Started by Cami in General. Last reply by Cami 1 hour ago. 9 Replies 0 Likes
I hope I am not oversteping the discussion rules with this question. Has anyone worked with Dr. Robert Friedlander in Pittsburgh? If so can you give me your opinion?Continue
Video of pictures from Abbey's surgery
Started by OhMy in General. Last reply by Finallyhavedx! 2 hours ago. 17 Replies 8 Likes
Just a quick video I threw together of Abbey's time in the hospital.https://vimeo.com/68461401Password: onlyyouContinue
What is ChiariSupport.org?
Welcome to ChiariSupport.org. We're glad you found our Community site. The purpose of this community is for people affected by a Chiari Malformation (types I-IV) to provide each other with emotional support. We are patients helping patients. We also have some parents/family members of those who suffer from Chiari Malformation.
What can you do on ChiariSupport.org?
1. Share your story on "My Page".
2. Start a new discussion on "Forum" and "Discussions".
3. Welcome new members with a comment on their page Welcoming Them To the group.
4. Share your photos/videos that inspire you or help you cope with living with Chiari Malformation.
5. Comment on other discussions and get to know your fellow members, make friends and get the support that WE ALL need.
Latest Activity
ModeratorMandy left a comment for Lost Aunt
"Hi Lost Aunt, welcome to the site!
Whether you’ve been recently diagnosed, or have known…"
ModeratorMandy left a comment for Mimi26
"Hi Mimi26, welcome to the site!
Whether you’ve been recently diagnosed, or have known about…"
ModeratorMandy left a comment for Laurie Routier
"Hi Laurie, welcome to the site!
Whether you’ve been recently diagnosed, or have known about…"
ModeratorMandy left a comment for thistle
"Hi Thistle, welcome to the site!
Whether you’ve been recently diagnosed, or have known about…"
ModeratorAbby commented on Tammy's blog post surgery day
"Tammy,
Hugs and kisses to you. We are all thinking of you and wish you all the best.…"
ModeratorMandy left a comment for Mike
"Hi Mike, welcome to the site!
Whether you’ve been recently diagnosed, or have known about…"
ModeratorMandy left a comment for Tippler22
"Hi Tippler22, welcome to the site!
Whether you’ve been recently diagnosed, or have known…"
ModeratorAbby left a comment for Lost Aunt
"Hello and Welcome,
You have come to the right place for great support and understanding. Glad…"
Dr. Trumble replied to alicemay1's discussion 20 month old with Type 1 Chiari Malformation"Agreed with all the above(well, except ignoring your MDs recommendations concerning surveillance…"
Jules0616 replied to robin's discussion heart to heart"Hey there! I just had surgery 9 1/2 wks ago (feels like years), but I just went and saw my surgeon…"
Top Content
| 1 |
8 mo. Post-op CINE MRIPosted by Anglyn on June 14, 2013 |
| 2 |
Video of pictures from Abbey's surgeryPosted by OhMy on June 15, 2013 |
| 3 |
I Letter to Patients with a Chronic DiseasePosted by Lori D on June 17, 2013 |
| 4 |
New to Chiari - would like guidancePosted by charsay3 on June 14, 2013 |
| 5 |
heart to heartPosted by robin on June 13, 2013 |
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Do you feel Misunderstood?
Do you feel Misunderstood?:Wonderful post by Abby on the ADD Support site. It starts with:
“Some times in life, we come in contact with those who just don’t get it or understand what we struggle with. I have many times. I guess the ones that hurt the most is family members who sweep it under the rug and hide it. Being misunderstood goes for other folks too, who struggle with other afflictions. “
"I am here because my daughter is here and i want to support her and learn more about chiari."
“I am here because my daughter is here and i want to support her and learn more about chiari.”- Member of Chiari Support Group
"Thanks for a wonderful site, and for all the information, I look forward to growing and learning..."
“Thanks for a wonderful site, and for all the information, I look forward to growing and learning more about Chiari here.”- Member of Chiari Malformation Support Group
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Blog Posts
surgery day
Posted by Tammy on June 19, 2013 at 4:40am 1 Comment 0 Likes
Hi everyone getting ready to go in for my decompression surgery!!!! It is happening at 845 this morning and I am so nervous and anxious at the same time to see if this is going to help at all.......i will post updates as I go and want to thank…
Continue surgery day
Posted by Tammy on June 19, 2013 at 4:40am 0 Comments 0 Likes
Hi everyone getting ready to go in for my decompression surgery!!!! It is happening at 845 this morning and I am so nervous and anxious at the same time to see if this is going to help at all.......i will post updates as I go and want to thank…
Continue
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