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NameJanet Mangano
Date2017-08-11
Locationclick picture for more information
Do You Have Chiari?yes
If you have Chiari, what is your primary symptom?severe headaches, shoulder stiffness
MessageWe need more doctors (not just surgeons) who are well versed in Chiari. It's very frustrating to not be able to find a doctor who knows what is going on.


NameBetty
Date2017-07-18
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?Pain headaches
Messagesmilie smilie


NameMelissa A Sterner
Date2017-06-28
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Do You Have Chiari?Yes and syringomyelia
If you have Chiari, what is your primary symptom?pain in neck and upper back
MessageI 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


NameMelissa A Sterner
Date2017-06-28
Locationclick picture for more information
Do You Have Chiari?Yes and syringomyelia
If you have Chiari, what is your primary symptom?pain in neck and upper back
MessageI 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


NameKarin Davis
Date2017-06-03
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?headache, weakness in arms and legs, numbness, etc
MessageI 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.


NameAmber
Date2017-05-03
Locationclick picture for more information
Do You Have Chiari?yes
MessageI 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 aeljwc1112@yahoo.com. I'd love to hear stories of other people's battles and triumphs over this unknown affliction.


NameGeiry colon
Date2017-04-08
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?Headaches
MessageI had surgery 3 weeks ago it's very hard to learn what and what not to do smilie smilie


NameDerek Dobbertin
Date2017-03-24
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Do You Have Chiari?suspected
If you have Chiari, what is your primary symptom?many after recent chiropractic neck adjustment
MessageNeurosurgeon 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.


NameShannon Henson
Date2017-03-15
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?Headache,nausea, nystagmus, pots, swallowing, vert
MessageI 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.


NameShannon Henson
Date2017-03-15
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?Headache,nausea, nystagmus, pots, swallowing, vert
MessageI 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.


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