Been doing better

I have been wearing my CTO vest to bed at night.

It takes a bit of getting used to. But the benefits outweigh the initial discomfort.

I simply can't believe how much better my "below the waist" symptoms are now that I'm wearing the CTO at night! This morning, there has been none of the pain in my hips, legs and feet. And I sleep much, much better because pain is not waking me up. What a strange thing to wake up without pain!

Before, I'd wake up each night with a lot of pain and having to go to the bathroom. I'd get up and be in so much pain in the hips and ... er...uh...backside, legs and feet. This is all tethered cord stuff, and although my spinal cord is no longer tethered after my Nov. 2007 surgery, I still experienced this immense pain that is impossible to explain. And tremendous weakness to where I could barely stay upright and walk. This has been going on each night for, well, since my injury almost five years ago.

I'd take a pain med, and then lie in the guest bed in agony waiting while it took hold. I used to sit up at the computer and answer emails or play solitaire until the pain passed, but now, the instability has progressed to where I need to lay my head down as often as possible.

That might hold me until about 3 hours had passed, then I'd wake up in tremendous pain again, take another pill, wait for it to help...maybe catch a nap in the morning....but all in all, it would take until late afternoon for the pain medication to finally catch the pain, and I'd start to feel a little bit better.

One can only imagine how we must bend at the neck, both laterally (sideways) and in extension and flexion (front and back). I know my whole life through, I've slept in an almost fetal position, and I can picture the flexion of my neck forward during the night when I'm unaware.

Did you know that the joint of the C1 and C2 is the most complex joint in the body? Think of the ways you can hold your head, the positions you can move your head and neck, and you'd think that joint should be a ball joint, not two rugged vertebrae.

I can't recall now where I got the idea, but I decided to try the CTO at night. The first couple of nights, I would wake up at 3 am and have to strip the harness off, the chin rest was just too uncomfortable ( I bet my head, from habit, was wanting to curl forward, a VERY bad position for someone with severe functional cranial settling, which means the odontoid bone of the C2 is poking up through the foramen magnum up into the brainstem area). But now, I find it easy to wear it all night.

When I go to get into bed, I notice right there how much support the CTO gives to my heavy head, and how much my neck does not.

Last night, I slept all night and woke up at 7 am. Ah! To wake up in your own bed, and not be in pain!

Someone posted on a message board something about diagnosing cranio cervical instability. She wrote that while she having the ICT (Invasive Cervical Traction) at TCI, she was told that what she felt like when they removed the weights of the traction was part of the diagnostic information of the test. She noted that she felt how heavy her head is.

I sure had this experience as well. When they removed the 45 lbs of traction, I felt a crushing of weight onto my spine! It felt just like they'd taken the weights and put them on top of my head! It was incredibly, well, crushing! I asked the radiologist, "What did you do? Put the weights on my head?" and he laughed (I wasn't joking) and said, "No, that's the weight of your head!"

I wonder if someone with a good cranio cervical area would not so much of an intense experience. Mine was so bad they had to admit me to the hospital that night, which was not planned.

Well, the power of suggestion. All this talk about how heavy the head is, and I feel strongly that I must go lie down and get that weight off again.

One note: I faxed a letter to my endocrinologist at OHSU, asking him to send a letter to Dr. B, my neurosurgeon, with his observations of how he feels I'd do with the surgery and the state of my bone density last week. I haven't heard anything yet. I haven't heard anything back yet on the 2- 24-hour urine collections I did last week, either. I'll keep you posted.

Off to bed for me. It's 8:40 am, but I have to get this weight onto a pillow.