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| Date | Nov, Sun, 2012 |
| Location |  |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | Type 1 had decompresion surgery twice |
| Message | this website is amazing ive had 2 surgeries for chiari this year and im an active duty navy female stationed in Washington. Im looking forward to reading others stories and finding answers to my own unanswered questions thank you !  |
| Date | Oct, Sat, 2012 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | severe headaches, passing out, vision, |
| Message | I have been having these headaches for years now. But i started having more problems such as; back problems which sent me to a pain management(where he just did an MRI of my neck) found a mild chiari malformation. He told me as he was walking out the room. so i went to get my mri results which in turn made me look it up. I found that most or all my symptoms sem to be related to this. i also have a disk desiccation. along with alot of tingling and numbing of the hands and feet, just alot of symptoms and too many Dr's never said anything to me. My pain management doctor is and wants to do an RFA procedure on my neck and i am scared now to let him do it, should i be? |
| Date | Oct, Tue, 2012 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | Numbness, Irregular Heartbeat, Balance |
| Message | Hello, I had prominent symptoms for 19 years prior to being diagnosed with Chiari 1 Malformation. I had been misdiagnosed many times over the years with MS; bruised spinal cord and had heard it was psychological. I took about a 10 year hiatus from searching for what it was as I was tired of dealing with doctors. I eventually started searching again and I eventually diagnosed myself by seeing the show Mystery Diagnosis about Chiari. I went to my neurologist and said that is what I had. They told me they would have caught it if that is what it was but after looking at my MRI again they determined I was correct. I just had surgery 9 weeks ago. My irregular heart beat is gone, my balance is much better. I have less numbness; my TMJ is better; no more shortness of breath. I would say overall my symptoms are 80 to 90% better and I have more energy than I have had in many years already. I am very happy I went through the surgery. |
| Date | Aug, Sat, 2012 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Chronic Pain, Fibromyalgia, choking, headaches, |
| Message | This is a wonderful site for people who want more than just the basic info about Chiari. I had my Craniotomy & Laminectomy decompression surgery back on March 20th 2001. It was not a "raging success", all it really did was to lesson the strong pressure headaches. After about 3 months, once everything in my brain and spinal cord started to "normalize" as the Drs put it, the pain, balance issues, choking and many other symptoms came right back. Since then, I've developed partial paralysis in my left hand, and my left leg is just starting to "not obey" my commands most of the time. My most recent MRI (gotta love the crappy ins cos that don't think I "need" regular MRIs) 2 years ago showed movement in my brain stem and 2 cerrabellar tonsils forming again. I was 33yrs when I had the first surgery. I've decided NOT to go through it again. Prior to my first surgery, the neurosurgeon told me that due to the damage I had a 50/50% chance of just surviving the surgery. My heart stopped 2 times for them, due to my fairly low blood pressure. After a year, the same surgeon told me I'd be lucky to make it 5 years without paralysis due to the extremely large and invasive residual syrinx. I'm 11 yrs post surgery. If I were to have it done again, they WON'T give me general anesthetic, and that I can't bear to think about. If anyone else has had these sort of problems, please email me. [email protected] Blessings to all that have a Chiari & to their families! Anne |
| Date | Aug, Sat, 2012 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Migraines |
| Message | I was diagnosed and had my decompression surgery October '01. I have never felt better now. I had most of the symptoms related to Chiari and now only suffer from chronic migraines and a few occational old symptoms. I live a normal life and would not change my decision to have surgery. |
| Date | Aug, Sun, 2012 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | headaches & still have them |
| Message | I had the surgery done in Balitmore MD on May. 21, 2002, and i still have really really bad headaches and numb on my right side!......i thought i needed to find someone like me, that is still have the pain!!???!!!.....i have been to 4 doctor's to try to find something that will make my pain, anything yet!!!! |
| Date | Jun, Thu, 2012 |
| Location | |
| Do You Have Chiari? | Debbie Truax |
| Message |  Great place to stay!!!!! |
| Date | May, Fri, 2012 |
| Location | |
| Do You Have Chiari? | my 3 yr old daughter does |
| If you have Chiari, what is your primary symptom? | vommitting,seizures, apnea ,poor eating .coughing, |
| Message | My daughter Vivian was diagnosed with a Arnold Chiari 1 and has one decompression surgery about 6 months ago,she also has hydrocephulus and 4 different distortions in her brain.She is experiencing back and neck pain ,seizures and vommitting every day.A MRI is coming up for her however if her symptoms do worrsen I will rush her to the ER. looking for any insights or info on Chiari as it is hard to come by and most doctors do not know squat about it. |
| Date | May, Wed, 2012 |
| Location | |
| Do You Have Chiari? | Yes! |
| If you have Chiari, what is your primary symptom? | Headache, Neck Pain, Balance Issues |
| Message | I was dignosed in October of 2011 and had the good fortune to be diagnosed quickly by Dr. Robert Todd in Syracuse, NY. Since then, I've had a wonderful meeting with Dr. Bolognese at the Chiari Institute and for once am thinking that after a lifetime of crazy symptoms perhaps I am not so crazy after all!  |
| Date | May, Wed, 2012 |
| Location | |
| Do You Have Chiari? | Yes! |
| If you have Chiari, what is your primary symptom? | Headache, Neck Pain, Balance Issues |
| Message | I was dignosed in October of 2011 and had the good fortune to be diagnosed quickly by Dr. Robert Todd in Syracuse, NY. Since then, I've had a wonderful meeting with Dr. Bolognese at the Chiari Institute and for once am thinking that after a lifetime of crazy symptoms perhaps I am not so crazy after all! |
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