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Name	Carri Gillenwater
Date	Mar, Tue, 2018
Location
Do You Have Chiari?	Yes
If you have Chiari, what is your primary symptom?	Neck,shoulder, arm pain. Central sleep apnea, hear
Message	I was diagnosed yesterday after going to many specialists cardiologist for fast and slow heartbeat, all heart tests normal. Appointment to see sleep and lung specialist after diagnosis in March 2017 for central sleep apnea. I have CPAP but still having issues with low heart rate durning apneas (47) and low oxegen levels (82). I have had a C spine forminonity and have a recommendation for a C4-C7 fusion (ACDF) due to arm, shoulder burning, tingling etc. In my last MRi they found the low lying tonsils, Chairi 1 malformation. So confused if I need the fusion now. I am in the process now of research.

Name	Kim Dismukes
Date	Feb, Wed, 2018
Location
Do You Have Chiari?	Yes
If you have Chiari, what is your primary symptom?	Headaches
Message	Hello everyone. I was diagnosed in 2002. I have had two decompressions. I still suffer from symptoms and have learned to live with my condition. This illness has brought about alot of mental and family problems with it as well. But I am human and I will conquer them one day at a time.

Name	Alice Braun
Date	Jan, Tue, 2018
Location
Do You Have Chiari?	Yes type 1
If you have Chiari, what is your primary symptom?	Neck pain among so many others
Message	Struggling to get help in As, labeled a difficult patient and possibly a drug seeker, I don't know for sure about the seeker issue but I'm treated that way. I'm at the end of my rope and so frustrated. All my problems seem to relate back to this.im so tired and want to be free of meds and all this crap, the doctors don't understand that.

Name	Kathy Adkins
Date	Dec, Mon, 2017
Location
Do You Have Chiari?	Yes
If you have Chiari, what is your primary symptom?	Back of head, neck, shoulder pain and Burning
Message	I haven't had decompression yet. I'm 66 years old and only diagnosed about 3 years ago with only migraines, hearing loss, and AFIb. Symptoms have changed, and I have gotten much worse but I'm afraid to have the surgery at my age. I'm also worried it won't help, and that recovery might be brutal and long.

Name	Kathy Adkins
Date	Dec, Mon, 2017
Location
Do You Have Chiari?	Yes
If you have Chiari, what is your primary symptom?	Back of head, neck, shoulder pain and Burning
Message	I haven't had decompression yet. I'm 66 years old and only diagnosed about 3 years ago with only migraines, hearing loss, and AFIb. Symptoms have changed, and I have gotten much worse but I'm afraid to have the surgery at my age. I'm also worried it won't help, and that recovery might be brutal and long.

Name	Amy
Date	Nov, Thu, 2017
Location
Do You Have Chiari?	Yes
If you have Chiari, what is your primary symptom?	headache, blurred vision, neck pain
Message	Hello, This is all new to me and looking on the web for helpful sites! God Bless

Name	Kate
Date	Sep, Sat, 2017
Location
Do You Have Chiari?	Yes & Syringomyelia - Newly Diagnosed
If you have Chiari, what is your primary symptom?	Neck and upper back pain
Message	I am shocked to only read negative experiences from all who have both Chiari and Syringomyelia. There must be success stories out there. I have been newly diagnosed and welcome talking to others. I dont believe life is to become awful from here. I want to fight this and manage it. I have two young children who need their active mum to stay that way. I am surprised that so little is known about this disease and disorder. If they MRI'd everyone at birth I think they would find that this is not rare at all but remains un-diagnosed in so many others. I would love to speak to a specialist who is experienced and not just interested in the operation option. In the UK you are referred back to your GP and this is useless as they do not understand the illness. We are left to fend for ourselves... Kate x

Name	Janet Mangano
Date	Aug, Fri, 2017
Location
Do You Have Chiari?	yes
If you have Chiari, what is your primary symptom?	severe headaches, shoulder stiffness
Message	We 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.

Name	Betty
Date	Jul, Mon, 2017
Location
Do You Have Chiari?	Yes
If you have Chiari, what is your primary symptom?	Pain headaches
Message

Name	Melissa A Sterner
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

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