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| Date | Jun, Wed, 2017 |
| Location |  |
| Do You Have Chiari? | Yes and syringomyelia |
| If you have Chiari, what is your primary symptom? | pain in neck and upper back |
| Message | I had cranial decompression in 2006. I had about 9 good years but recently have been having swallowing issues where I actually stop breathing. Pain in cape area, pressure that seems to fill my head along with 24/7 buzzing in ear, vertigo and the list goes on |
| Date | Jun, Sat, 2017 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | headache, weakness in arms and legs, numbness, etc |
| Message | I have recently been told I have a Chiari Type 1 Malformation. I have been experiencing a large majority of the "classic and red flag symptoms" for almost four years now. I have had several MRI's to help with my symptoms but mom showed a Malformation until my most recent MRI. I am currently getting records so I can schedule with a Neurosurgeon that specializes in Chiari. I do not know what my future holds but I know my symptoms are continuing to progress. Since this is not a very common condition, I am looking for support groups and people who understand what is happening to my body. I love my family dearly and they are supportive, but I am not sure they see this as I do. Speaking with others may help me make more sense of all of this. |
| Date | May, Wed, 2017 |
| Location | |
| Do You Have Chiari? | yes |
| Message | I have had symptoms for the last 6 or 7 years and was only diagnosed last year. Before that I thought I was experiencing severe symptoms of vertigo caused by trauma to my head and neck from an extremely abusive relationship. Little did I know that what I was experiencing were symptoms of a condition I was born with. Since my diagnosis, I've been researching and researching and learning as much as I can about this condition I have. The most recent symptom is nausea on a daily basis. This is something I've only experienced when I was pregnant. You may be thinking I might be pregnant again. Not possible. Pregnancy is a condition usually brought on by 2 people. I'm only me. :P This new symptom indicates the possibility that my condition may be getting worse. This worries me because if I can avoid it, I'd rather not have the decompression surgery. I'm a single mom and my boys don't have their dad in their life. I'm all they have. I can't leave them to face this world on their own. They're 4 and 5. Anyone who wants to connect with me can email me at [email protected]. I'd love to hear stories of other people's battles and triumphs over this unknown affliction. |
| Date | Apr, Fri, 2017 |
| Location |  |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headaches |
| Message | I had surgery 3 weeks ago it's very hard to learn what and what not to do  |
| Date | Mar, Fri, 2017 |
| Location | |
| Do You Have Chiari? | suspected |
| If you have Chiari, what is your primary symptom? | many after recent chiropractic neck adjustment |
| Message | Neurosurgeon needs closed MRI to verify. Open MRI was not sufficient. I'm extremely claustrophobic and very scared. I've lived with a mild version of this for four years. Recent chiropractic neck adjustment sent my condition plummeting.My condition seems to be tied to the barometric pressure in my area. That's the only thing that seems to fit the rapid decline and improvement in my condition. |
| Date | Mar, Tue, 2017 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headache,nausea, nystagmus, pots, swallowing, vert |
| Message | I have EDS3 AND POTS. I spend 75% of my day lying down. Travel has become difficult past 20 minutes. My neurosurgeon is more focused on my c5-6 ruptured disk than my 5 mm chiari. I stay strong and positive. I lost my career as a nurse manager due to my illness and morn the loss as I have become my own patient and advocate. |
| Date | Mar, Tue, 2017 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headache,nausea, nystagmus, pots, swallowing, vert |
| Message | I have EDS3 AND POTS. I spend 75% of my day lying down. Travel has become difficult past 20 minutes. My neurosurgeon is more focused on my c5-6 ruptured disk than my 5 mm chiari. I stay strong and positive. I lost my career as a nurse manager due to my illness and morn the loss as I have become my own patient and advocate. Drs don't listen to me any more as they did when I was advocating for others. |
| Date | Oct, Sun, 2016 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headaches, shoulder pain. Tightness in throat, ect |
| Message | In 2009 at the age 50, I was diagnosed with IIH. 2010, I had a programmable LP shunt put in. 2013 I was diagnosed with Os Odontieum and had stabilization of C1 and C2 8 months later I was diagnosed with Davf and had surgery to close the fistula. Then in August of 2015 I was diagnosed with Arnold Chiari malformation with a 1.5cm herniation. I was told that I am not a candidate for the surgery because of my neck surgery. At this time I am on fentanyl patch and Norco for the pain. I would like to know something about what I am in for since surgery can not be done. |
| Date | Apr, Sat, 2016 |
| Location | |
| Do You Have Chiari? | Baldwin |
| If you have Chiari, what is your primary symptom? | NEW YORK |
| Message | Just met Brenda Yung at a lecture given by Dr Greenfield last week in NYC My 18 year old daughter was diagnosed with Chiari 1.5 malformation with a syrinx 10 days before she was leaving as a freshman to college. It has been an overwhelming time having her away, getting her into to see various doctors for consultations and tests. Looking to have her surgery done in June, decompression and possible fusion. Still cannot believe this and that there are only treatments and no cure, Glad I found this site!! |
| Date | Apr, Sat, 2016 |
| Location |  |
| Do You Have Chiari? | Decompression surgery sept. 2011 |
| If you have Chiari, what is your primary symptom? | Cervical spondylosis and Hydrocephalus |
| Message | Many other symptoms: Double vision, Syringomyelia, Parkinson's onset, Decompensation thermal (sweat asymmetric). Discovered by chance relatively late in 53 years. Surgeon prof. Ion Poiată, excellent professional, Spital Neurochirurgie Iasi. |
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