I realize its been a little while since I've posted - sorry about that. After my trip to NY I was very overwhelmed and in a lot of pain. There was so much excitement I will have to give it to you in two posts. So, here is NY post #1:
The reason for our adventure to NY was to see my surgeons. I have been a patient at The Chiari Institute, on Long Island, for almost six years. We arrived on Wednesday, and my testing was scheduled for Thursday - all day. I spent my day in MRI, CAT scan, and X-ray machines getting my annual does of radiation. There was some blood drawn and then I was able to meet my mom and son for dinner in the city. I picked up my scans the next morning before my appointments with my docs. As soon as I looked at them I knew it was not going to be a good appointment. After all this time I've figured out what a good, clean MRI looks like and this wasn't it.
My first appointment was with a neurologist specializing in Chiari Malformation, Ehlers Danlos syndrome, and Tethered cord. We went over my scans and he told me a few things - 1. I have a pseudomeningocele, a large one. This is a spinal fluid leak with the fluid settling at the base of my skull around my cerebellum and spinal cord. 2. My lumbar spine was fractured at the connection between L-4 and L-5, spondulolysis. 3. My L-4 was moving forward trying to shift out of position, spondylolisthesis. The next appointment was with the surgeon and guess what he said? Oh, yes - surgery. We discussed my options, his various recommendations, and then he sent me back for more scans. It was Friday afternoon and he wanted them done as soon as possible, so I returned to the imaging center. I was then told to get a brace, go home and lay down.
So, this is why I have not be able to post. I couldn't sit at the computer for any period of time without increasing my pain level and I do not own a laptop. I ended up having surgery in Indy on Dec. 2, which makes me ten weeks post-op today. The tale of surgery and recovery is one for another post. . . which I promise to write in the next few days. It was an intense surgery and I am still recovering, but the worst is over. Now that my back has been corrected, its time to think about my pseudomeningocele and how it will be treated.
Through all of this my family and friends have been wonderful - bringing meals after my surgery, calling everyday to check in, helping with my son. My amazing husband has taken over all responsibilities. I am a lucky girl to have people in my life that give me love and support.
