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Old 03-30-2011, 11:16 PM #1
gagirl74 gagirl74 is offline
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Confused im new here! have chiari looking for good dr. in middle ga exp with chiari!!!

my name is jenn! i am 36 . i was dx with chiari last oct only 4mm drop. but all my smptoms add up with all that ive read on here and on other chiari sites, at first i was miss dx'ed with fibro then they were thinking m.s... scary! but i think all my symptoms r linked to chiari. i have had the severe headaches in the back of my head since 16 yrs old. my main problems lately r leg weakness and a burning sensation in my shoulder blades.. especially the left 1! and when i extend my reach over my head it feels like someone is sticking hot needles in my shoulders! ive had just the 1 mri on my head when they found the chiari, then 1 on my neck and they only found degenerative disc disease at c-6 and c-7, would like to find a chiari exp neuro to get a full spine mri from plz help. live in middle ga mear macon. thx
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Old 03-31-2011, 06:03 AM #2
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Old 04-03-2011, 11:55 AM #3
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Smile gagirl74

Hi jenn maybe the chiari forum could help i am fam with this defect i myself have had the chiari surgery in tampa not fam with ga though your pain does sound related you need a ns cally
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Old 04-03-2011, 09:55 PM #4
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hi jenn, i live in colorado, and just had my surgery march 3 of this year. i am in my post op thing. i still have symptoms, but not as bad as before. i don't understand how one could work with this going on. i talke meds that put me to sleep because my head was a mess (smile)
we have a great doctor in colorado ( dr. john oro) and he is the top of the line, but like i said he's here in colorado.i have applied for ssdi ( soc/security) and waiting for may to go to my hearing....obviously they must have thought i was lying or something,,,i had 27 stitches in the back of my head....but if you have any questions, you can email me okay?
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Old 04-04-2011, 09:30 AM #5
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Cool andriss

Hi Andriss hope you are filling better my name is cally welcome to talk to another chiarian been 6mths post op for me still have some problems but we have to remember this is not a cure can only make room for r big brains lol hope to talk to ya cally tampa
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Old 04-14-2011, 10:22 AM #6
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Originally Posted by gagirl74 View Post
my name is jenn! i am 36 . i was dx with chiari last oct only 4mm drop. but all my smptoms add up with all that ive read on here and on other chiari sites, at first i was miss dx'ed with fibro then they were thinking m.s... scary! but i think all my symptoms r linked to chiari. i have had the severe headaches in the back of my head since 16 yrs old. my main problems lately r leg weakness and a burning sensation in my shoulder blades.. especially the left 1! and when i extend my reach over my head it feels like someone is sticking hot needles in my shoulders! ive had just the 1 mri on my head when they found the chiari, then 1 on my neck and they only found degenerative disc disease at c-6 and c-7, would like to find a chiari exp neuro to get a full spine mri from plz help. live in middle ga mear macon. thx
Hi Jenn, my name is Angeline and I live in Savannah. I have a Chiari I and I will be having a decompression surgery in early June with Dr. Daniel Suh. He's been incredibly easy to talk to and I have a lot of confidence in him. He trained at Emory, and he's probably around 40 years old.
I am Critical Care Nurse at St. Joseph's in Savannah, so I pretty much know all the doctors. I know it's a bit of a drive, but I thought I'd respond anyway. Let me know if you should have any questions about Dr Suh, Chiari, or the surgery.
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Old 06-19-2011, 12:24 PM #7
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Originally Posted by gagirl74 View Post
my name is jenn! i am 36 . i was dx with chiari last oct only 4mm drop. but all my smptoms add up with all that ive read on here and on other chiari sites, at first i was miss dx'ed with fibro then they were thinking m.s... scary! but i think all my symptoms r linked to chiari. i have had the severe headaches in the back of my head since 16 yrs old. my main problems lately r leg weakness and a burning sensation in my shoulder blades.. especially the left 1! and when i extend my reach over my head it feels like someone is sticking hot needles in my shoulders! ive had just the 1 mri on my head when they found the chiari, then 1 on my neck and they only found degenerative disc disease at c-6 and c-7, would like to find a chiari exp neuro to get a full spine mri from plz help. live in middle ga mear macon. thx
Dr. Daniel Barrow at Emory Hospital in Atlanta, Ga. He did my chiari decompression surgery in February 2011. I consider it a blessing to find him and the surgery recovery was no problem at all. I highly recommend him!
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Old 06-20-2011, 12:21 PM #8
res5562965 res5562965 is offline
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Default My Chiari experience....hope this helps you

I have never had headaches until Jan 2010 and it started with the noise in my ears like you described. I was first diagnosed with occipital neuralgia(pinched nerve) because the person that read my first MRI did not pick up on the Chiari. It is hard to diagnose the Chiari even with a MRI. It takes the right radiologist to see it. After the Chiari diagnosis 11/2010 I then had a MRI with a study of the flow of Spinal Fluid and that is when I was diagnosed with Chiari I malformation and Arnold's Chiari 11/2010. Immediately 11/2010 they put a shunt in my head to let the fluid flow instead of being trapped in my head (immediate relief). The pain was very different from a "migraine headache". It was a continuous pain in a specific place in my head, a pressure pain like someone had their fist inside my head pushing to the top of my head, mine on the left top. That's the only way I know to describe it. It took almost a year to get the correct diagnosis and a different doctor to diagnosis it correctly. The shunt relieved the pressure pain but did not relieve all my symptons. Pain when I sneezed, coughed, or gagged. That was from the Chiari where my "brain tonsils" were pushed through the opening in the base of my skull due to my skull being too small for my brain. I then had Chiari decompression surgery 2/2011 where they make the opening @ base of skull larger and removed a part of my vertebrae to give my brain more room. This surgery helped with the remaining pain I was experiencing. I still have to have the shunt because the aquaducts that allow flow are small and have evidently gotten smaller with age. I was 48 when all this began. It usually effects people earlier since it's a congenital condition (born with it). No idea why it affected me at such late age.
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Old 07-28-2011, 12:50 PM #9
Cindy Miller Cindy Miller is offline
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Default surgery by Dr. Oro

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Originally Posted by andriss View Post
hi jenn, i live in colorado, and just had my surgery march 3 of this year. i am in my post op thing. i still have symptoms, but not as bad as before. i don't understand how one could work with this going on. i talke meds that put me to sleep because my head was a mess (smile)
we have a great doctor in colorado ( dr. john oro) and he is the top of the line, but like i said he's here in colorado.i have applied for ssdi ( soc/security) and waiting for may to go to my hearing....obviously they must have thought i was lying or something,,,i had 27 stitches in the back of my head....but if you have any questions, you can email me okay?
Couldn't resist emailing you. Dr. Oro did my (third) decompression surgery on March 1st this year! He's amazing and although I had many complications and ended up staying in the hospital (and then rehab) until March 26th, I know that man saved my life. We live in Oregon and after 2 decompressions and shunt surgery in 2007, I did okay for awhile but last year spent most of the year in bed (or in the hospital)with horrible nausea, headaches, inability to swallow (had to have a feeding tube), balance issues and speech problems. We went to Dr. Oro out of desperation and after my surgeon here said my MRI's looked okay, Dr. Oro said the opposite-that I was severely compressed. I have had such a total turn around that my family can hardly believe it. Still working on balance, still have slight headaches from bending and laughing, etc. but other than that everything is gone. It was so weird to eat and drink again! Thank goodness for his dedication to this nasty condition! Oh, I am on disability and had no problem getting on. I worked for the school district and Standard Insurance, their private disability provider, hires a private group that fights for people to get disability ( so that Standard doesn't have to keep paying...) I got on SS first try.
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Old 07-28-2011, 01:07 PM #10
Cindy Miller Cindy Miller is offline
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Quote:
Originally Posted by gagirl74 View Post
my name is jenn! i am 36 . i was dx with chiari last oct only 4mm drop. but all my smptoms add up with all that ive read on here and on other chiari sites, at first i was miss dx'ed with fibro then they were thinking m.s... scary! but i think all my symptoms r linked to chiari. i have had the severe headaches in the back of my head since 16 yrs old. my main problems lately r leg weakness and a burning sensation in my shoulder blades.. especially the left 1! and when i extend my reach over my head it feels like someone is sticking hot needles in my shoulders! ive had just the 1 mri on my head when they found the chiari, then 1 on my neck and they only found degenerative disc disease at c-6 and c-7, would like to find a chiari exp neuro to get a full spine mri from plz help. live in middle ga mear macon. thx
I have discovered the hard way that you don't look for a "good" doctor nearby, you find the best doctor wherever he/she may be. I have had 5 surgeries to prove that and we went out of state to see two famous Chiari specialists, Dr. Richard Ellenbogen in Seattle and Dr. John Oro in Denver and we chose Dr. Oro to operate on me this March. I was so close to death by the time he operated after a year of nausea, inability to swallow, terrible headaches, speech and balance problems, etc., etc. (all this after having 2 decompression surgeries, shunt surgery and shunt revision surgery)and I now have my life back. Obviously, insurance and $ is a huge problem but we were able to get our insurance co. to cover the surgery after a lot of phone calls and letters. Everything was worth it. Dr. Oro has performed over 600 of these surgeries and he knows what he's doing. Good luck to you!
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