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

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

help 4 days away
 

:( 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!!!:D

Surgery
 

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


--------------------------------------------------------------------------------

Post Op
 

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.

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

IF YOU CANNOT LIVE At ALL WITH THE SYMPTOMS<< DO NOT GET IT DONE<< IT MIGHT JUST BE THE START OF MORE NIGHTMARES

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

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

that's the truth for me. Pure hell. 12 years post op and worse everyday. :mad:

Hi JoAnne,
My name is Meg and i've only just been diagnosed with Chiari. I'm waiting now to find out when surgery will be done to try and correct this condition.
The pain is unbearable at times, in my head, neck, shoulder, chest, arm, wrist down to my finger tips.
Sometimes my whole upper body feels like it is being strangled or that i'm wearing a corset that is tied way too tight :-/ And i dont wear corsets lol
I hope that your recovery now will be quicker and better for you. I guess i have all this to look forward to. I never thought i would ever be looking forward to having brain surgery, tho i'm not looking forward to it, i just want the pain to stop and to try and get some sort of life back.
Hang in there Jo Anne
:) xoxo

Chiari Dr in Florida
 

Depending on where in Florida you live, Dr Steven Dutcher (Palm Beach Neurosurgery) in West Palm Beach is terrific as is the entire staff. I had my ACM craniotomy, laminectomy and dura patch 3 weeks ago and I am already back to work. Muscles in the neck are still sore and weak but am doing really well.

not that sure
 

this is my first post i have had 4 acm surgeries since 2003 and i am not back to myself it has help i have came a long way but i still have some problems i guess what im trying to say is stay strong and keep fighting it has to get better for all of us with acm

Anyone with these symptoms?
 

I had decompression surgery with a duraplasty in February 2012, since then there have been days when i had headaches and chiari pain but nothing too bad or unexpected. Until lately.
I have been having intense headaches almost every night, looking down is extremely painful and washing my hair sets up the pain for the night. my fingers have been tingling occasionally. also, I'm not sure if this is chiari related but i have been having hiccups almost every day for the past couple weeks.
I would love to avoid the doctor but this has me a little worried. Anyone had these symptoms post decompression?