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NameKim Dismukes
Date2018-02-21
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?Headaches
MessageHello 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.


NameAlice Braun
Date2018-01-16
Locationclick picture for more information
Do You Have Chiari?Yes type 1
If you have Chiari, what is your primary symptom?Neck pain among so many others
MessageStruggling 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. smilie


NameKathy Adkins
Date2017-12-11
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?Back of head, neck, shoulder pain and Burning
MessageI 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.


NameKathy Adkins
Date2017-12-11
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?Back of head, neck, shoulder pain and Burning
MessageI 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.


NameAmy
Date2017-11-16
Locationclick picture for more information
Do You Have Chiari?Yes
If you have Chiari, what is your primary symptom?headache, blurred vision, neck pain
MessageHello,
This is all new to me and looking on the web for helpful sites!
God Bless


NameKate
Date2017-09-09
Locationclick picture for more information
Do You Have Chiari?Yes & Syringomyelia - Newly Diagnosed
If you have Chiari, what is your primary symptom?Neck and upper back pain
MessageI 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


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
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


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


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