Just thought I would update on my status. Not just for self indulgent reasons but since I have heard this questioned and debated. I had first surgery just over two years ago. I don’t consider the first a decompression - more of a debacle than anything else. My MRI pre/post looked almost identical with the exception that I had flow restored to some degree. But boy my symptoms certainly said that I was still bad. Had second just over a year ago. Although this was much more invasive - dura opened, half of c1 taken and portion of skull removed to allow space. The recovery was by far easier with far less complications. But did go over my one year CINE MRI yesterday with a fine tooth comb. There is more than enough room, big area with great fluid flow and no restrictions and herniation is gone. It now sits well above the foreman magnum. So once space was provided things retracted on their own. I by no means feel perfect and having dysautonomia certainly is a monkey wrench in my process but at least my list of things to worry about are one thing shorter. I will be seeing a hematologist in May to address my antiphospholipid antibody result and I am gonna run every other test under the sun to cross other things off the list. I tend to have all autoimmune issues so hopefully this will provide another piece to my medical puzzle. And I will cross that bridge if and when I get those results. Nl suggested neurontin yesterday for my headaches cause lets face it - all they really know how to do is prescribe. But I am waiting until I see hematologist as I am sick to death of adding more chemicals to the mix until I have more specific answers. So as this game goes - two steps forward one step back - but I am gaining ground although sometime I feel I measure it in inches more than feet. And I am getting back to pt because it really was helping a great deal but you also get to the point where even good appointments become appointments just the same - and honestly if I thought one dr cared or took any interest outside of just their little box - I could stop being a medical Sherlock Holmes. Even I am tired of thinking about me - but I have yet to find someone who will really take charge - I would happily hand over the reins. But for now it looks like I continue on in my venture to feeling good - or even just functional all the time. As the saying goes - on to the next…
Thanks for your news!!! Great!