# Welcome **URL:** https://forum.chiarisupport.org/c/welcome/23.md [Latest](https://forum.chiarisupport.org/latest.md) · [Categories](https://forum.chiarisupport.org/categories.md) · [Tags](https://forum.chiarisupport.org/tags.md) --- ## [Welcome To Our New Discourse Site](https://forum.chiarisupport.org/t/welcome-to-our-new-discourse-site/8812)
**Author:** [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [August 20, 2016, 3:18pm UTC](https://forum.chiarisupport.org/t/welcome-to-our-new-discourse-site/8812 "2016-08-20T15:18:34Z")
Were you a member of our old Chiari Online Support Group? Simply LOG IN with your old user name and click on "Forgot password". We will send you a link to claim your old profile. First time visitor? Please go to our M… --- ## [About Chiari Online Support Group](https://forum.chiarisupport.org/t/about-chiari-online-support-group/8808)
**Author:** [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [August 20, 2016, 3:05pm UTC](https://forum.chiarisupport.org/t/about-chiari-online-support-group/8808 "2016-08-20T15:05:59Z")
What is Chiari Online Support Group Chiari Online Support Group is a dedicated patient-to-patient support community for patients and families affected by Chiari. Chiari Online Support Group is powered by BensFriends.o… --- ## [About the Welcome category](https://forum.chiarisupport.org/t/about-the-welcome-category/8799)
**Author:** [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\ **Replies:** 2\ **Last updated:** [June 2, 2017, 1:19pm UTC](https://forum.chiarisupport.org/t/about-the-welcome-category/8799 "2017-06-02T13:19:41Z")
Chiari Support is an online support group for patients, friends and families affected by Chiari Malformations. Chiari malformation, is usually present at birth and occurs at the back of the head where the brain and spin… --- ## [Anxiety & Struggle](https://forum.chiarisupport.org/t/anxiety-struggle/14963)
**Author:** [@Dtellz](https://forum.chiarisupport.org/u/Dtellz)\ **Replies:** 0\ **Last updated:** [September 15, 2026, 4:03pm UTC](https://forum.chiarisupport.org/t/anxiety-struggle/14963 "2026-09-15T16:03:48Z")
--- ## [8 months post op desperately seeking hope and/or advice](https://forum.chiarisupport.org/t/8-months-post-op-desperately-seeking-hope-and-or-advice/14961)
**Author:** [@kellyd](https://forum.chiarisupport.org/u/kellyd)\ **Replies:** 1\ **Last updated:** [September 10, 2026, 6:32pm UTC](https://forum.chiarisupport.org/t/8-months-post-op-desperately-seeking-hope-and-or-advice/14961 "2026-09-10T18:32:28Z")
I’m 49 years old and eight months post-Chiari decompression. Before I say the next bit, I want to say, I have the best team of drs. I don’t think anyone has done anything wrong and I feel like they are working hard to h… --- ## [Decompression surgery was not worth it](https://forum.chiarisupport.org/t/decompression-surgery-was-not-worth-it/14957)
**Author:** [@Shasha](https://forum.chiarisupport.org/u/Shasha)\ **Replies:** 2\ **Last updated:** [September 9, 2026, 4:34pm UTC](https://forum.chiarisupport.org/t/decompression-surgery-was-not-worth-it/14957 "2026-09-09T16:34:09Z")
Does anyone feel like surgery has done nothing to exept give them more pain --- ## [Malformation awareness month](https://forum.chiarisupport.org/t/malformation-awareness-month/14958)
**Author:** [@Shasha](https://forum.chiarisupport.org/u/Shasha)\ **Replies:** 0\ **Last updated:** [September 6, 2026, 1:37am UTC](https://forum.chiarisupport.org/t/malformation-awareness-month/14958 "2026-09-06T01:37:27Z")
Please raise awareness for chiari malformation awareness month --- ## [Hello from Shawn](https://forum.chiarisupport.org/t/hello-from-shawn/14954)
**Author:** [@Shawn](https://forum.chiarisupport.org/u/Shawn)\ **Replies:** 1\ **Last updated:** [August 30, 2026, 1:48pm UTC](https://forum.chiarisupport.org/t/hello-from-shawn/14954 "2026-08-30T13:48:17Z")
Hello everyone. I had a TIA a few weeks ago. The MRIs they did showed a 7mm malformation. They found a Meningioma pressing against my brain stem. And a small aneurysm. The neurosurgeon said he has never seen someone with… --- ## [Newly Diagnosed - Does everyone have surgery?](https://forum.chiarisupport.org/t/newly-diagnosed-does-everyone-have-surgery/6823)
**Author:** [@txgirl09](https://forum.chiarisupport.org/u/txgirl09)\ **Replies:** 87\ **Last updated:** [August 1, 2026, 10:22pm UTC](https://forum.chiarisupport.org/t/newly-diagnosed-does-everyone-have-surgery/6823 "2026-08-01T22:22:30Z")
I was just diagnosed a week ago with Chiari I. I've had lyme disease for many years, and headaches are nothing new to me. My neck pain and headaches at the back of my head have been much worse recently after a water pa… --- ## [Just an intro from fellow chiarian from UK](https://forum.chiarisupport.org/t/just-an-intro-from-fellow-chiarian-from-uk/14750)
**Author:** [@Helzbellz77](https://forum.chiarisupport.org/u/Helzbellz77)\ **Replies:** 10\ **Last updated:** [October 20, 2024, 8:03pm UTC](https://forum.chiarisupport.org/t/just-an-intro-from-fellow-chiarian-from-uk/14750 "2024-10-20T20:03:19Z")
Hello everyone .just thought I’d say hi from UK .diagnosed in April this year after 4 months of severe head pain and a range of other issues Currently on topirimate which seems to be helping to control the headaches but… --- ## [Any United Kingdom Warriors Out There 😘](https://forum.chiarisupport.org/t/any-united-kingdom-warriors-out-there/12260)
**Author:** [@ChiariWarrior13](https://forum.chiarisupport.org/u/ChiariWarrior13)\ **Replies:** 4\ **Last updated:** [October 5, 2024, 9:47pm UTC](https://forum.chiarisupport.org/t/any-united-kingdom-warriors-out-there/12260 "2024-10-05T21:47:45Z")
Hey there please read my profile if any of u are interested in chatting more. Be happy to hear from u. Sorry to say United kingdom…It’s just that due to the NHS out experiences and treatment mat be different. Any chair… --- ## [Neurosurgeon and Ohio](https://forum.chiarisupport.org/t/neurosurgeon-and-ohio/14734)
**Author:** [@Brenda\_Y](https://forum.chiarisupport.org/u/Brenda_Y)\ **Replies:** 0\ **Last updated:** [September 3, 2024, 5:19pm UTC](https://forum.chiarisupport.org/t/neurosurgeon-and-ohio/14734 "2024-09-03T17:19:38Z")
--- ## [My brain does not feel right](https://forum.chiarisupport.org/t/my-brain-does-not-feel-right/14632)
**Author:** [@Kris64](https://forum.chiarisupport.org/u/Kris64)\ **Replies:** 5\ **Last updated:** [November 23, 2023, 1:58am UTC](https://forum.chiarisupport.org/t/my-brain-does-not-feel-right/14632 "2023-11-23T01:58:43Z")
Hi, I’m new to this group and have spent a few days reading through some of the threads, which have been very helpful and reassuring. My brain does not feel right. I’ve felt that way at times for the last few years, but… --- ## [Intro and a few questions](https://forum.chiarisupport.org/t/intro-and-a-few-questions/14615)
**Author:** [@Austin](https://forum.chiarisupport.org/u/Austin)\ **Replies:** 4\ **Last updated:** [November 17, 2023, 2:29pm UTC](https://forum.chiarisupport.org/t/intro-and-a-few-questions/14615 "2023-11-17T14:29:43Z")
Hi everyone, My name is Austin, I was seeing a neurologist for chronic headaches that started in 2021. After getting an MRI it was discovered that I have a 4mm displacement. My symptoms are largely relegated to headache… --- ## [Welcome Andrea!](https://forum.chiarisupport.org/t/welcome-andrea/14544)
**Author:** [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\ **Replies:** 1\ **Last updated:** [February 21, 2023, 11:50pm UTC](https://forum.chiarisupport.org/t/welcome-andrea/14544 "2023-02-21T23:50:14Z")
Hi @Amd1988 and welcome to Ben’s Friends! I wanted to make certain that your story didn’t get lost, especially because you have some question. Sharon from ModSupport Good morning. I’m hoping I can have some opinions he… --- ## [Community Guidelines](https://forum.chiarisupport.org/t/community-guidelines/14243)
**Author:** [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 11, 2021, 3:55pm UTC](https://forum.chiarisupport.org/t/community-guidelines/14243 "2021-11-11T15:55:00Z")
This is a Civilized Place for Public Discussion Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share skills, knowledge and interest… --- ## [Privacy Policy](https://forum.chiarisupport.org/t/privacy-policy/6)
**Author:** [@system](https://forum.chiarisupport.org/u/system)\ **Replies:** 0\ **Last updated:** [August 18, 2016, 7:15pm UTC](https://forum.chiarisupport.org/t/privacy-policy/6 "2016-08-18T19:15:05Z")
What information do we collect? We collect information from you when you register on our site and gather data when you participate in the forum by reading, writing, and evaluating the content shared here. You do not have… --- ## [Terms of Service](https://forum.chiarisupport.org/t/terms-of-service/4)
**Author:** [@system](https://forum.chiarisupport.org/u/system)\ **Replies:** 0\ **Last updated:** [August 18, 2016, 7:15pm UTC](https://forum.chiarisupport.org/t/terms-of-service/4 "2016-08-18T19:15:04Z")
The following terms and conditions govern all use of the Ben’s Friends website and all content, services and products available at or through the website, including, but not limited to, Ben’s Friends Forum Software, Ben’… --- ## [How is Ben’s Friends Different from Social Media and Other Support Sites?](https://forum.chiarisupport.org/t/how-is-ben-s-friends-different-from-social-media-and-other-support-sites/14242)
**Author:** [@ModSupport](https://forum.chiarisupport.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 11, 2021, 3:54pm UTC](https://forum.chiarisupport.org/t/how-is-ben-s-friends-different-from-social-media-and-other-support-sites/14242 "2021-11-11T15:54:04Z")
Many people wonder how a Ben’s Friends community is different from social media and other support sites. The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and in yo… --- ## [New User Guide](https://forum.chiarisupport.org/t/new-user-guide/13729)
**Author:** [@BF\_Admin](https://forum.chiarisupport.org/u/BF_Admin)\ **Replies:** 1\ **Last updated:** [February 3, 2021, 3:24am UTC](https://forum.chiarisupport.org/t/new-user-guide/13729 "2021-02-03T03:24:18Z")
Are you a new user? Don’t worry we will guide you through the following videos. How to Create An Account? Click the image to watch the video on creating a new account. --- ## [Hello group](https://forum.chiarisupport.org/t/hello-group/13829)
**Author:** [@Jayjay](https://forum.chiarisupport.org/u/Jayjay)\ **Replies:** 1\ **Last updated:** [November 17, 2020, 2:41am UTC](https://forum.chiarisupport.org/t/hello-group/13829 "2020-11-17T02:41:15Z")
First I would like to thank the creator(s) of this group. I’ve read many of the stories and it sounds just like me and after this ordeal I get I’m not alone or delusional. My story begins a year after I came back from a… --- ## [Curious about others](https://forum.chiarisupport.org/t/curious-about-others/13717)
**Author:** [@Cmt1](https://forum.chiarisupport.org/u/Cmt1)\ **Replies:** 27\ **Last updated:** [November 9, 2020, 7:12am UTC](https://forum.chiarisupport.org/t/curious-about-others/13717 "2020-11-09T07:12:20Z")
Do any of you with Chiari work, if so how does it effect you? Do any of you get disability? Does anyone get severe muscle aches almost like RLS & spasms? Do you suffer from extreme fatigue? What medicines help you the … --- ## [8 months out after 2nd chiari decompression surgery](https://forum.chiarisupport.org/t/8-months-out-after-2nd-chiari-decompression-surgery/13549)
**Author:** [@Css2141](https://forum.chiarisupport.org/u/Css2141)\ **Replies:** 3\ **Last updated:** [September 17, 2020, 12:23am UTC](https://forum.chiarisupport.org/t/8-months-out-after-2nd-chiari-decompression-surgery/13549 "2020-09-17T00:23:34Z")
I found out in July of 2019 that I had developed a cyst and excessive scar tissue that ultimately took all the space they gave me with the first surgery. With increasing headaches and returning neck pain I was told they … --- ## [Newbie - Charlee](https://forum.chiarisupport.org/t/newbie-charlee/13684)
**Author:** [@Charlee](https://forum.chiarisupport.org/u/Charlee)\ **Replies:** 7\ **Last updated:** [September 12, 2020, 2:40am UTC](https://forum.chiarisupport.org/t/newbie-charlee/13684 "2020-09-12T02:40:40Z")
Hi all, Looking forward to learning how other people with Chiari are doing and what makes things easier or harder. I am especially interested in those who are older (I am near 65). Seems harder to figure out what new pr… --- ## [Moving through](https://forum.chiarisupport.org/t/moving-through/13687)
**Author:** [@BFIntern\_Jakob](https://forum.chiarisupport.org/u/BFIntern_Jakob)\ **Replies:** 1\ **Last updated:** [September 8, 2020, 8:50pm UTC](https://forum.chiarisupport.org/t/moving-through/13687 "2020-09-08T20:50:59Z")
Hi Charlene (@Charlee), Welcome to your new community! It sounds like you have been pursuing your symptoms for many years now, I hope we can help shed light on some ways that our members cope with those symptoms. It see… --- ## [Odd seizure not sure what it was](https://forum.chiarisupport.org/t/odd-seizure-not-sure-what-it-was/13480)
**Author:** [@CreamyOpal](https://forum.chiarisupport.org/u/CreamyOpal)\ **Replies:** 7\ **Last updated:** [August 25, 2020, 7:30pm UTC](https://forum.chiarisupport.org/t/odd-seizure-not-sure-what-it-was/13480 "2020-08-25T19:30:08Z")
Last night I had what I think is a seizure. I was getting ready for work and sitting on my bed putting makeup on then all of a sudden I start feeling twitches in my face, hands, neck and head. Then out of no where my hea… --- ## [Icp monitoring](https://forum.chiarisupport.org/t/icp-monitoring/13624)
**Author:** [@Lorri79](https://forum.chiarisupport.org/u/Lorri79)\ **Replies:** 1\ **Last updated:** [August 15, 2020, 3:09am UTC](https://forum.chiarisupport.org/t/icp-monitoring/13624 "2020-08-15T03:09:27Z")
Hi i came out of hospital on wednesday after having icp monitoring done. Since its been out i havent felt right. Has anyone else gone through this and did you feel rubbish afterwards --- ## [Meet Jenny](https://forum.chiarisupport.org/t/meet-jenny/13596)
**Author:** [@BFIntern\_Jakob](https://forum.chiarisupport.org/u/BFIntern_Jakob)\ **Replies:** 2\ **Last updated:** [August 7, 2020, 1:20am UTC](https://forum.chiarisupport.org/t/meet-jenny/13596 "2020-08-07T01:20:07Z")
Hi @JennyAnn, I wanted to take the chance to introduce you to our community! I noticed that you would like to meet more folks like you. You have come to the right place! I never realized just how important that was unti… --- ## [Living with CM](https://forum.chiarisupport.org/t/living-with-cm/13533)
**Author:** [@Elisabethr](https://forum.chiarisupport.org/u/Elisabethr)\ **Replies:** 1\ **Last updated:** [June 18, 2020, 9:03am UTC](https://forum.chiarisupport.org/t/living-with-cm/13533 "2020-06-18T09:03:51Z")
Any with a shunt still deal with leg and hand swelling? Mine is VERY BAD. I have to take Lasix every day --- ## [New to this site](https://forum.chiarisupport.org/t/new-to-this-site/13488)
**Author:** [@Mrs.Awesome](https://forum.chiarisupport.org/u/Mrs.Awesome)\ **Replies:** 0\ **Last updated:** [May 30, 2020, 6:06pm UTC](https://forum.chiarisupport.org/t/new-to-this-site/13488 "2020-05-30T18:06:16Z")
Hi everybody, my name is Nikki and I’m new to this site. My story is long as I’m sure most of yours is as well. I was diagnosed in 2018 after I had a hysterectomy in 2017. I was experiencing extreme fatigue, migraines, m… [Next page](https://forum.chiarisupport.org/c/welcome/23.md?page=1)