Hello all. I was diagnosed with Chiari type 1 in March of last year. I had surgery in May of 2014. Decompression with C1 laminectomy. I felt amazing for the first 3-4 months, had a very smooth recovery. Within the past 4-5 months, my symptoms & headaches have come back and are now much worse than before. (headaches, ear aches, muscle spasms in neck, neck stiffness, pain and tingling in my arms, weakness in my hands, numbness/tingling in my legs, difficulty swallowing, acid reflux, nausea...I could go on...) I have had CT scans and MRI's and my neurosurgeon has come to the conclusion I will be needing a second surgery. My surgery is scheduled for the last week of this month. He is planning on re-doing my decompression (removing more bone around base of my brain, inserting a larger patch and either shrinking or removing parts of my cerebral tonsils. I am very nervous about this operation as I have done research and it seems to be a debated surgery among neurosurgeons. Has anyone had this operation? Was it successful? Recovery time? Any symptoms occurring because of operation? Thank you in advance for the responses!!
-Shelby
Yes...I have spoke to doctors in the hospital who have ruled that out.
Rebecca said:
And you have ruled out EDS and CCI, right?
He did a laminectomy and also removed the first vertebrae in my neck. The reason he is having to re-do it a second time is because my cerebral tonsils are massive. Much bigger than what they are supposed to be. My herniation during my first surgery was measured at 16 mm and I still have herniation, although not sure how much. He's concerned I still don't have enough space. As far as trusting him with another surgery...I do not find it necessary to find another NS...he's one of the best in the region and nationally recognized. He does amazing work, I just think he didn't anticipate my Chiari needing as much work as it does.
Nykki said:
Hi Shelby,
I am so sorry and frustrated that you have to have a do-over. So, all he did was the laminectomy and nothing else?
Shelby, sorry you are having the returning symptoms. That happened to me too, and besides the pain it is a hopeless feeling. Chiari is not always a one and done for many of us, it can be a journey. My tonsils were cauterized and that has not caused a problem for me, it has become pretty standard with decompressions.
I, too, had immediate questions about possible CCI.
Have you looked at the Brighton Criteria and Beighton Criteria? Being hypermobile puts you at greater risk for having it acquiring CCI.
Please look into this fully because not all NSs will…some will tell you they don’t recognize any CCI in your imaging simply because they are unaware of what it looks like. Not saying this is your NS, but it’s your body and your future- you should know if it has truly been ruled out.
Here is some text about CCI:
http://ihiwg.org/wp-content/uploads/2013_henderson_recognition-of-cranio-cervical-instability_san-diego.pdf
Here is a video with more content:
CSFinfo.org
Videos
Metropolitan area
Watch videos about CCI and Chiari
My symptoms returned around the 4 month mark post op. My then NS told me to start wearing a cervical collar, and that helped a great deal. I did have CCI and so the collar limited forward and backward motion of head and neck, this lessened spinal cord streatcing and bending. I had to find a new NS who could diagnose the CCI and also fix it.
Jenn 