Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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Brain & Nervous System
/ Arnold-Chiari Malformation Support Group

Second surgery for my son!

deleted_user
deleted_user
Actually, my son had his decompression surgery 7 weeks ago. From the beginning he didn't feel better at all. The recovery never got easier. Two weeks ago....I took him to his Optomotrist and found out his double vision was due to his optic nerves swelling. He also had a pool of fluid in his lower skull area. We went to the emergency room and they did an MRI which confirmed the spinal fluid was backing up. Our neuro drained his incision area 3 times last week...each time 130 cc's of fluid had built up. They decided to redo the surgery...and found out that 2 stitches had torn from the decompression surgery. They patched him up..and did a lumbar drain for 3 days. As of today, he is home and feeling tremendously better!! I am telling this story because I know so many people sometimes need answers and help understanding why they feel a certain way. Thank goodness he is doing better!
deleted_user
deleted_user
thank you for this story, this is exactly what happened to me and I had to be reopened. I was so scared and the drains made me so sick that I lost 20 pounds and I literally thought I was dying until I started to see better and walk...the stitches tore in theinstead and they took out 1 1/2 cups of fluid that was "stuck"...it was scary, I am so glad you son is doing better.
Misred
Misred
Yes, sounds scary. My daughter had her surgery two weeks ago and I am constantly nagging her about not doing anything.

I hope your son continues to improve
deleted_user
deleted_user
I was similar to this, and a combo with KAKFamily

I am soooo glad he is feeling better, and on the mend. I can tell you that I did heal after they drains came out. I did not want to go back in a 3rd time.

Hugs to mom and son (((HUGS)))
ChristyW
ChristyW
I'm so happy and relieved to hear that he is doing better. I was really concerned about his vision. I'm so glad you took him to the doctor and they found the issue. He is lucky to have such a great Mom in his corner!
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