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.
Hey all!
I haven't written in a while. I was cleared (happily) by my NS, Neuro, and Cardiologist recently and was thrilled. But over the past few days, I have been experiencing horrible pain in my middle back.. I don't if it is Chiari related or something else. Feels like it is toward the lower part of my ribs. Also having an increase in my neck pain. Was decompressed in Jan 2011. My Neuro isn't concerned b/c dont have a fever... Don't know how I feel about that. He has been great otherwise. My NS says structurally everything looks great and my syrinx hasn't changed after surgery but is so small that it would be dangerous to try to drain it.. I stopped using a cane about a month ago and was feeling about 90-100% about a week ago.. I would LOVE to know if anyone else has experience anything else like this. You have all been such a help in the past. Love to you all and God Bless!!!
I haven't written in a while. I was cleared (happily) by my NS, Neuro, and Cardiologist recently and was thrilled. But over the past few days, I have been experiencing horrible pain in my middle back.. I don't if it is Chiari related or something else. Feels like it is toward the lower part of my ribs. Also having an increase in my neck pain. Was decompressed in Jan 2011. My Neuro isn't concerned b/c dont have a fever... Don't know how I feel about that. He has been great otherwise. My NS says structurally everything looks great and my syrinx hasn't changed after surgery but is so small that it would be dangerous to try to drain it.. I stopped using a cane about a month ago and was feeling about 90-100% about a week ago.. I would LOVE to know if anyone else has experience anything else like this. You have all been such a help in the past. Love to you all and God Bless!!!
You have relayed my experience verbatim! I'm so glad you posted because I am shocked by the sudden onset of my symptoms. I had decompression in December 2010. All of my symptoms went away. In mid August, they seemed to come back over night, and time has only made things worse. However, the thing that is killing me right now is back pain, neck pain, and leg pain - much worse than before surgery. I had an MRI done to see if the syrinx went away. I have not gotten the actual report yet, but I called my doctors office and, like you, a nurse informed me it has not gotten smaller.
May I ask how big your syrinx is? (If you do not want to disclose that information that is perfectly fine). Before surgery mine was 4.5mm. I don't know if that is considered small? However, I am under 5 ft tall - if that makes a difference or not. It may be bigger now, but I won't know until I get the report since the nurse I talked to didn't know about any of this.
Like you, I am obviously concerned that something is wrong with the chiari or I have another condition like tethered cord. I am interested to see how things resolve for you. I would keep researching and not settle with this terrible back pain. For me, I am having difficulty walking, and have not slept in nights because of the severity of the pain.
As for the syrinx in your back, I would think that even a small syrinx can cause big problems - although I cannot say for sure. All you can do is get a second opinion at this point.
Again, thanks for posting. It is a real comfort to know someone else is going through the same thing. Although, of course, it saddens me to hear of your pain.