Sign Guestbook Back to Chiari Connection International
| Date | Apr, Thu, 2014 |
| Location |  |
| Do You Have Chiari? | No, two of my children do. |
| If you have Chiari, what is your primary symptom? | pain at the base of the skull, vision issues |
| Message | Daughter 11 w/ Chiari II & Spina Bifida, Tethered Cord, Epilepsy, SVS Son 16 w/ Chiari I & Autism |
| Date | Mar, Sun, 2014 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | severe heardaches |
| Message | I had decompression surgery in Janu 2011. I had a 9mm syrinx. I recouperated well, but am having a lot " bad neck " days. The pain can be severe, emanating from the left rear of my neck. I take Soma for this pain, but somedays nothing will " make it go away ". I am doing some internet research on scar tissue. I was "grafted" with what I call " astroturf for brains ". The back of my C-1 and C-2 vertebrae were removed. I had the surgery done at Presby Hospital in Pittsburgh, Pennsylvania by The Chief of Neurosurgery. |
| Date | Jan, Wed, 2014 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | neck, back pain, balance, vision, weakness, issues |
| Message | I would just like it if more people understood the symptoms of Chiari and not just push them off as something else. Or say its all in your head. That's the problem right, it is in your head! I had decompression in1996, was doing really good until I fell on the ice in 2007 and have been going down hill since and seeing doctor after doctor to tell me my chiari is just fine nothing to worry about. Relax, change your diet, and exercise more. Just want some understanding and respect for what I am feeling not just another pill or therapy to cover it up. Feeling alone!  |
| Date | Jan, Fri, 2014 |
| Location | |
| Do You Have Chiari? | Daughter diagnosed |
| If you have Chiari, what is your primary symptom? | Headaches, Tinnitus, Dizziness |
| Message | Glad to find you. My 7 y.o. daughter is newly diagnosed and seeing a specialist soon. This is a wonderful site for parents and patients. Thank you! |
| Date | Nov, Sun, 2013 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headache. Lower back pain. |
| Message | THANK YOU for the website. So helpful. |
| Date | Aug, Fri, 2013 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Pain |
| Message | I had decompression surgery last April (2012) and for the most part my symptoms seemed to clear up. Unfortunately about 9 months post op, I started exhibiting both old and new symptoms. I had a CSF leak and contracted bacterial meningitis due to the surgery and required a second surgery 2 weeks later so I am assuming that my recurrence of symptoms are due to these complications. Regardless, I am miserable and frustrated to no end. Just doing some more research and trying to reach out to other Chiarians to help me cope with this. |
| Date | Aug, Sat, 2013 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headaches |
| Message | I think this is a wonderful site |
| Date | Aug, Sun, 2013 |
| Location | |
| Do You Have Chiari? | Yes 8mm,arachnoid cyst,twisted artery in brain |
| If you have Chiari, what is your primary symptom? | Pressure headache, pain, dizziness, ringing in ear |
| Message | Can't find a Neurologist who is willing to help! Now have numbness in bottom of foot, drooling ...etc! HELP!  |
| Date | Jul, Sun, 2013 |
| Location |  |
| Do You Have Chiari? | I have Chiari 1, EDS and Hydrocephalus |
| If you have Chiari, what is your primary symptom? | Headache. balance problems ++++++ |
| Message | I have a problem finding a medicine that will help for my pain. Have tried different ones, but only Oxycontin helps, but I dont like to use them. I have no one to help me, and that know about Chiari and EDS. It's very difficult when you have to find out everything by yourself. |
| Date | Jul, Mon, 2013 |
| Location | |
| Do You Have Chiari? | No, my husband does |
| If you have Chiari, what is your primary symptom? | Pressure/pain back of head |
| Message | My husband and I have been trying to get a diagnosis for his problem for going on 4 years now, and finally have been told that he has CM. We're relieved to have a name for what is wrong, but are very scared about what to expect from surgery, how long he'll be out of work, and if he'll actually get better. Some of the stories are terrifying. |
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