Sign Guestbook Back to Chiari Connection International
| Date | Jan, Wed, 2011 |
| Location |  |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | neck pain, "chiari headaches" |
| Message | i would to talk with other people who have chairi, someone please email me, [email protected], thank you  |
| Date | Jan, Sun, 2011 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | head pains |
| Message | I had decompression surgery in December 2009. I still suffer from many symptoms, mainly severe head pain. I don't like to call them headaches because it is completely different. Looking to meet others to receive and give support.  |
| Date | Dec, Tue, 2010 |
| Location | |
| Do You Have Chiari? | Yes, ACM-1 |
| If you have Chiari, what is your primary symptom? | all except curvature of the spine (yay, me!) |
| Message | In response to: Rebekah Peterson Date 2010-10-12 Diagnosed in 8/10 with 10mm herniation. Radiologist reported incidental mild ACM1, because there was no brain tumor. Symptoms have been troublesome for 10+ years and debilitating progressively since 6/09. Diagnosed with Scoliosis at 17 & told it would never progress. Latest MRI shows severe progression and needs to be stabilized with fusion. CM & Scoliosis are possible linked. I also have Degenerative Disc Disease, Kyphosis, spondylosis, no lordosis in the cervical cavity and the list continues. I have tried injection therapy no relief. I'm scheduled to see the Neurosurgeon on 11-1. I would love to meet anyone that has Chiari and lives in Washington state, specifically Seattle or Tacoma. I'm tired of Chiari running my life and I'm going to put up a fight until the very end. Hi, Rebekah! I live near Seattle and would LOVE to get in contact with you. My address is jmw76 (at) live (dot) come if you would like to email me! ~ Jenn |
| Date | Dec, Sun, 2010 |
| Location | |
| Do You Have Chiari? | I think I have TCS - I get tested tomorrow |
| Message | Right now my worst symptoms are headache, dizziness, gray spots in vision, back tension and tinnitus. They can't find anything else wrong with me except that I have classic EDS. I've already had an MRI of head and neck tomorrow is the thorax and sacrum. I live in Omaha, Ne and there is not a lot of openness and awareness in the medical community here. Thank you so much for hosting this site. It is very informative. Sincerely, Effie Goodall |
| Date | Dec, Sun, 2010 |
| Location | |
| Do You Have Chiari? | Yes, ACM-1 |
| If you have Chiari, what is your primary symptom? | all except curvature of the spine (yay, me!) |
| Message | Well...where should I begin! I was diagnosed with ACM-1 (as well as MS) in February 2010. I had never heard of it before, so I began researching it. The diagnosis fit me to the letter! I began having headaches as a child. I remember being under the age of 5, having a headache, crawling into my parents' bed, and taking a crushed up excedrin with grape jam because I couldn't swallow it whole. I had my first migraine at age 10. I'm looking to find someone else in the Seattle area with whom I can talk about sharing this disease. Thanks! ~ Jenn |
| Date | Dec, Wed, 2010 |
| Location | |
| Message | Thanks, nice post. Keep up the good work |
| Date | Nov, Wed, 2010 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | Headaches, Neck Pain, Collar-bone pain... |
| Message | Diagnosed in August 2009 after 10 years of symptoms, over a dozen mis-diagnosis,& numerous un-supportive Doctors... that finally led me to Dr. Bolognese at The Chairi Institute- Thank God! I was Decompressed in Dec.2009 and although some symptoms have gone away (or decreased in frequency or severity)...most of my symptoms are still with me on a daily basis. So-I'm currently working on keeping a POSITIVE ATTITUDE as I continue to recover, begin to face some of my additional Chiari-related conditions,& reach out to others on the same Journey with Chiari. (**Especially others locally- in Virginia or N.C. who may be interested in forming a monthly support group or a quarterly get-together??**)  |
| Date | Nov, Wed, 2010 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | Headaches, Neck Pain, Collar-bone pain... |
| Message | Diagnosed in August 2009 after 10 years of symptoms, over a dozen mis-diagnosis,& numerous un-supportive Doctors... that finally led me to Dr. Bolognese at The Chairi Institute- Thank God! I was Decompressed in Dec.2009 and although some symptoms have gone away (or decreased in frequency or severity)...most of my symptoms are still with me on a daily basis. So-I'm currently working on keeping a POSITIVE ATTITUDE as I continue to recover, begin to face some of my additional Chiari-related conditions,& reach out to others on the same Journey with Chiari. (**Especially others locally- in Virginia or N.C. who may be interested in forming a monthly support group or a quarterly get-together??**) |
| Date | Nov, Wed, 2010 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | Headaches and Neck Pain |
| Message | Wonderful web-site you have developed for those with Chiari seeking information and support from others going through the same/similar issues! |
| Date | Oct, Sun, 2010 |
| Location | |
| Do You Have Chiari? | Yes! And them some others!!!! |
| If you have Chiari, what is your primary symptom? | double vision, neck and back of head pain, vomitin |
| Message | Goodness, where do you start??? Lived one of the most active lives a lady could live with being called a tom-boy and redreck! All of a sudden after a accident I was slowing debilating to what looked like a MS patient or as my Nuro said! At any point, I never gave up and wanted a reasonable answer to my problems. They came and went with the days and where stronger with my female cycle! Come to find out I had hydro-cephalus with Chairi I, and the need of a Tethered Cord. I was a hot mess! Interviewed the best docs in the world with my father and we both loved TCI in NY! The Team is world class and understand the wish and needs of a patient. I wanted Children more than anything! Dr. B got me to a point that I could have my first and my second. But I always know my next surgery is around the corner and make every min count with my family. You always have to believe in your team that keep you together, including my NP, June and Lisa! We all have bad days or weeks but the good days are the best especially if you spend them with the ones you love! I'm here for anyone with needs! If I haven't gone through it personally I can still listen! My husband has been with me since the beginning and I can tell you that this condition will be trying on your marrage! Stay strong and learn to talk and lean on each other! You have a Chairi Family Behind You! Bea Yung |
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