I just returned from my 6 week follow up with Dr. Heffez. My dad and I traveled to Milwaukee from my parent's house in Chelsea, MI. It's about a 6 hour drive, then I flew out of Milwaukee back home.
Long story short is this: The new MRI images are amazing. I don't have a copy of that MRI but am hoping to get one soon. The images look totally different, there is a ton of 'white space' around my brain stem now, and the arteries aren't even touching the brainstem where they used to be distorted into almond shapes before because they were being crushed. Dr. Heffez even pointed out the plate he put in to 'keep my brain from falling out.' His words. It was funny.
That being said, he is not happy with the lack of progress I have made and was hoping for more relief from my symptoms. He looked back at his post op notes and he said there was 'a lot of deformity that was corrected' so I think there was more than he thought initially. He is pretty baffled by my leg pain, but does want to give it more time because there was so much damage that needs to right itself.
He looked again at my cervical spine MRI and my lumbar spine images. In the lumbar spine he is looking for something called tethered cord (TC), which means basically the tissue of the spinal cord attaches to the spine sort of, and causes a lot of discomfort and leg pain. I have a bit of 'abnormal activity' in my 4 lumbar vertebrae, and he said if it were any lower down the spinal cord it would be considered tethered cord. But since it isn't, he's skeptical. He's also skeptical because I present some symptoms of TC but not all the classic symptoms. He is baffled, I think. Which is not what I want.
He is also a little concerned about a bit of my cervical spine (neck) images. It's hard to explain without an image, but basically there's a part of the lower brain stem/upper spinal cord (not really sure what it is, to be honest) that is supposed to 'float' within the spinal fluid column. In my image, it shows the inner cord to start in the middle, go down a bit and veer off and touch my vertebrae. That's not good, I guess. So what does that mean?
That means I now need to wear a 'soft cervical collar' aka a neck brace 24-7 for 2 weeks. The hypothesis is that if I spend a lot of time with my chin vertical and not tilted down (tugging on that spot that's connected to the bone) it will give me relief. Wearing the brace is sort of an experiment - if I experience relief, then I guess there is quite a bit of physical therapy and postural therapy that can be done to really improve that.
I guess the bottom line is that he wants to see more improvement, but because there was so much corrected in there I need more time. He is fairly baffled by the leg pain, so I think he's trying the neck brace to try to figure out that pain, and some of the other pain may resolved itself while I continue to heal.
I don't have to tell you that I'm frustrated, I think that's obvious. And to feel like I'm going backwards - being able to do more, then having to be confined to a neck brace feels like a backslide. It is what it is. If I get any tryingtobefunny comments about the neck brace, I will definitely punch said person in the throat. Not in the mood to joke about this. Annoyed. Mad. So let's just all pretend it doesn't exist, ok?