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Old 09-22-2011, 09:24 PM   #1
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Join Date: Apr 2004
Location: Allenton, Michigan
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ventcrew HB User
Surgery for Chiari - Need Input!!!!!

Hello all,

Last month I was diagnosed with a Chiari 1 Malformation. I was told that the Chiari is causing 90% of my symptoms. The Dr. said surgery is totally up to me. I am begging anyone who had decompression surgery for a Chiari to please share your stories of surgery with me. I am very concerned about the pain after surgery, if the meds help it. How long and horrible the recovery is etc....
Please do not sugar coat anything. Do you think it was all worth it? My husbands insurance might be changing so I have to make up my mind very soon if I am getting surgery. All input is greatly appreciated and welcomed!!


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Old 09-23-2011, 02:14 PM   #2
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Join Date: Jul 2011
Location: Edmonton, AB, Canada
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PinkEarthMama HB UserPinkEarthMama HB User
Re: Surgery for Chiari - Need Input!!!!!

*I* did not have Chiari surgery, but my now 4 year old daughter DID. Twice.

How large is your herniation?

What are your symptoms?

M's chiari was 12 mm long and extended through c1. She had a bony decompression and dural scoring. It was several weeks before she was willing to turn her head. But the difference for her was immediate. She had been on a feeding tube for a YEAR. After surgery, she began to eat. Her last tube feeding was in the hospital after surgery. Two years later, she is eating like a normal child. THANK GOODNESS!

Eight months after surgery, her headaches and night crying returned. A trip to the doctor and an MRI showed that the compression was back and that the herniation was now kinked. During surgery, fluid FOUNTAINED out.

She did have some pain issues both times, and some vomiting. Zofran helped with the vomiting. She was pretty heavily dosed on morphine for a few days. I think it was about two weeks before she stopped complaining of a constant headache, and from there, she got better very very quickly. It was a wonderful surgery and I would ABSOLUTELY do it again for her. In a heartbeat.

Old 10-07-2011, 10:02 PM   #3
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Location: Allenton, Michigan
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ventcrew HB User
Re: Surgery for Chiari - Need Input!!!!!


Thank you so much for responding to me. I am so glad that your daughter is doing so well. It makes me smile. Mine is just 5mm but it is crowding my spinal cord and compressing my brain stem. My symptoms are constant head pressure, intracranial hypertension, headache, numbness and tingling of head and hands. I sometimes have burning, weakness and pain all over my upper body. I sometimes can't get my words out. My reflexes are hyper and my evoked potentials and brain response test came back abnormal. I do manage to get by and even work part time. Only 3 hrs a day. I am trying to get disability. My husbands insurance is switching and will not cover my surgery in Wisconsin. I have decided instead of rushing into surgery I would wait a while and see what happens. If it gets worse I might find a doctor here in Michigan that does the decompression but in the mean time I will deal with it. Thanks again!!
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Old 10-08-2011, 12:04 AM   #4
Join Date: Oct 2011
Location: Kansas
Posts: 1
Abbs2005 HB User
Re: Surgery for Chiari - Need Input!!!!!

My mom goes in next week for the surgery she just found out about it less than 3 weeks ago. I hope all goes well for you and hopefully can give u some answeres, ive looked everywhere and i cant find much to help.

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