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Post-op Arnold Chiari Malformation surgery

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Unread 02-17-2007, 05:32 PM   #1
JoAnne Hobbs
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Smile Post-op Arnold Chiari Malformation surgery

Hi, my name is Jo Anne. I had surgery January 18, 2007 in Miami. I had a cranectomy with supocciptal and C1 Lami with graft. I had been fighting major headaches for 6-8 months and getting worse. My neck were hurt and burn. I had difficulty swallowing, and off balance. I had three opinions before me and my family decided that surgery would be best. I've known that I have had Arnolds Chiari since 2000, with a MRI. I had a cyst-tonsil around 10mm and had syringmelia in the thoracic area. This was making Cerebral Spinal Fluid hard to flow properly. Surgery was on a Thursday and I don't remember anything until Monday. Yes, I was in pain! Tuesday they took out my shunt drain in the lumbar area. Weds. I started to get tremdious pressure in my head when I stood up, M.D. states that I have a cerebral spinal leak, and that they would have to do a blood patch. On friday morning they took me down to o.r. had me lye on my belly, which hurt, they did a lumbar puncture, and add my blood to the leakage area. I finally went home Friday evening. I still couldn't balance myself without help. Physical Therapy gave me a walker. Now I'm 4 weeks postop, I'm finally getting outpatient therapy for dizziness and strength training. Has anyone else had this problem after surgery? How long does it last? I want to back to a normal life. Thanks for listening, JO Anne
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Unread 02-21-2007, 10:16 AM   #2
Chemar
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Hello Jo Anne and welcome to Neurotalk tho sorry for the circumstances that bring you here.

I hope someone with more knowledge of this than I will be around to help you soon
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Unread 05-19-2007, 09:11 PM   #3
ANGELAMARCH23
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Quote:
Originally Posted by Chemar View Post
Hello Jo Anne and welcome to Neurotalk tho sorry for the circumstances that bring you here.

I hope someone with more knowledge of this than I will be around to help you soon
I NEED HELP MY DAY IS ALMOST HERE FOR THE ACM1 SUGERY AND I DON'T KNOW WHAT TO EXPECT. I fell like i spend all my time on the computer trying to find photos so i know what to look for but it is not helping please help tell me what goes on (if you can)thanks!!!
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Unread 05-20-2007, 01:22 PM   #4
razzle51
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Joanne I do hope you are having surgery by this Dr. He is the Chiari expert in Florida .
Barth Green, MD.
http://neurosurgery.med.miami.edu/x66.xml?id=34983
Professor and Chairman
Department of Neurosurgery
University of Miami
Miami, Florida
The Miami Project to Cure Paralysis
http://www.miamiproject.miami.edu


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Unread 10-22-2009, 10:54 PM   #5
brainiac
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Originally Posted by JoAnne Hobbs View Post
Hi, my name is Jo Anne. I had surgery January 18, 2007 in Miami. I had a cranectomy with supocciptal and C1 Lami with graft. I had been fighting major headaches for 6-8 months and getting worse. My neck were hurt and burn. I had difficulty swallowing, and off balance. I had three opinions before me and my family decided that surgery would be best. I've known that I have had Arnolds Chiari since 2000, with a MRI. I had a cyst-tonsil around 10mm and had syringmelia in the thoracic area. This was making Cerebral Spinal Fluid hard to flow properly. Surgery was on a Thursday and I don't remember anything until Monday. Yes, I was in pain! Tuesday they took out my shunt drain in the lumbar area. Weds. I started to get tremdious pressure in my head when I stood up, M.D. states that I have a cerebral spinal leak, and that they would have to do a blood patch. On friday morning they took me down to o.r. had me lye on my belly, which hurt, they did a lumbar puncture, and add my blood to the leakage area. I finally went home Friday evening. I still couldn't balance myself without help. Physical Therapy gave me a walker. Now I'm 4 weeks postop, I'm finally getting outpatient therapy for dizziness and strength training. Has anyone else had this problem after surgery? How long does it last? I want to back to a normal life. Thanks for listening, JO Anne
I had surgery 2 months ago and I'm still fighting the equilibrium problems, and pain, although it has become better with time, I had a LP shunt put in and that has its own issues, but the fluid returning to normal flow may or may not happen, several doctors and surgeons have told me that they can't fix the problem but only to give you some relief from the pain and maintain your quality of life.
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Unread 04-21-2010, 01:54 PM   #6
soccero
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Unhappy acm

hi I'm 16 and had surgery on aug. 17. I'm in a great deal of pain constatly now and I'm about 60-70% worse then before surgery. If u want to no more let me no
Molly
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Unread 04-22-2010, 08:24 AM   #7
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IF YOU CANNOT LIVE At ALL WITH THE SYMPTOMS<< DO NOT GET IT DONE<< IT MIGHT JUST BE THE START OF MORE NIGHTMARES
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Unread 09-20-2010, 09:51 PM   #8
Chef_connor
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Default I had a similar problem but developed two forms of meningiti. also and then had to ha

I had a migraine for a year then my arm went numb. I had shoulder surgery to repair it and it got worse. I had The craniotomy and removal of three vertebrae backs. I then developed a tear in the grapht and two forms of meningitis. I ended up having a second emergency surgery and have been battling all of the symptoms since then some worse then before. I have developed a roaming neuropathy does this sound normal
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Unread 10-01-2010, 09:46 AM   #9
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Does your pain change from day to day. I mean where it actualy is cause most of the time it's my left arm and leg but sometimes it's my back. And my neck never stops hurting
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Unread 04-22-2012, 01:38 PM   #10
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Originally Posted by Feel the Burn View Post
IF YOU CANNOT LIVE At ALL WITH THE SYMPTOMS<< DO NOT GET IT DONE<< IT MIGHT JUST BE THE START OF MORE NIGHTMARES
that's the truth for me. Pure hell. 12 years post op and worse everyday.
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"Thanks for this!" says:
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