This morning, I had my follow up appointment with my neurologist to find out what the MRI and spinal Xrays showed. I was so hoping that it could just be fixed with a shot. Not so much.
The doctor sat down, pulled out the radiologist's report and then told me that he agreed with the radiologist's findings. Good news and bad news....
Good news: There IS a problem. Actually, there ARE problems. Two of them. The first one is something called Arachnoiditis. Basically, the nerves around my spine and the covering around them are damaged, swollen, inflamed, and they are clustering and adhering together. This is something I had never heard of, but when he showed me on the spinal model and explained the issue, it totally makes sense. This explains the lower back pain, the pain in my hips, the backs of my legs, the prickly feeling I get in my legs, the numbness and tingling in my foot and toes. How can we help this? Well, I am not really sure right now, because we mainly addressed the other issue the doctor wanted to discuss.
He thinks I also have a condition called Tethered Spinal Cord. This is a congenital defect where, much like a stretched rubber band, my spinal cord is attached instead of being loose and being able to bend and move with my body. As a baby and child, it wasn't stretched, but as I grew, it tried to stretch with me. This explains why I started having pain in my teenage years. I had the hardware removed when I was 20 because of pain...and it helped....but I continued to have pain. Now it is progressively getting worse. It makes sense why it wasn't caught as a child...it wasn't an issue.
It also explains why I have so many urologic issues that my urologist has never been able to accurately identify. So many times I have gone into see him, with pain and pressure only for him to tell me that I do not have a UTI. All these nerves are responsible for my bladder as well. My doctor requested all the paperwork from my urologist to further study this.
So the doctor wants me to have a myelogram to confirm this, and see the severity of the Arachnoiditis and TCS. He explained that he can surgically go in, snip my spinal cord loose, and the issues shouldn't progress. They may even improve. But if nothing is done, it will only get worse. Um, this is bad enough. He told me this is a major quality of life issue.
I told him all the little details. I have always had pain, but in the last year it is getting worse. I can't sit for very long, stand for very long, lie down for very long. I can no longer sit on the floor with my kids. When I try to stand it takes me a while to be able to stretch back out to be fully upright. I have had to stop going to Body Pump and can no longer lift weights. I can still do zumba, but there are days when it hurts more than others. There are times when I cannot feel the ground under my feel. There are times when my entire leg tingles. There are times when I feel like jolts of electricity run down my back and legs. The top of my right foot and the first two toes are tingly and numb. Some days I wake up with pain, other days it begins later in the day, but by every evening, I am in pain. Some days are better than others.
I have a pretty high pain tolerance and don't like to complain, but this is no joke. Tuesday, after I did zumba, I was driving my boys for a playdate and my right hip felt like it was on fire for a good hour. It went away after I rested, but returned later that night. I can tolerate some moderate daily pain....I just make sure that I rest when we are out places. When we are shopping, I sit for a while, then get up again. When we were on vacation, I came back to our camper to lie down frequently. At Schlitterbahn, we swam for a while, and then I came back to lounge, then we swam, then I sat and so on and so forth.
I am going to continue to exercise as much as I can without doing the weight lifting and body pump. The walking and zumba are less impacting :) Let's hope next week we can get some more answers and ways to help take care of some of these issues.