Journal of progression

I use this blog as a journal of sorts for me to reference when I need to know how I was feeling a year ago, what a brainstem compression issue felt like, what symptoms to tell my doctor when I go for a consult or surgery, to compare how I felt before and after surgery. This blog has been a big help to me that way.

So, please bear with me today as I relate how I am feeling these days.

"Bring on the fusion! Bring on the halo!"

What I once feared and shunned, now I wish for.

And Dr. B's words ring in my ears when I remember him saying, "You WILL get to where you will take the risk and wish for surgery." I tried to prove him wrong for several months. How did he get so smart?

Although I had a swallow study that said everything is normal, it doesn't mean that that symptom has gone away. I tried to think like that, but such is not the case. My swallowing issues are back in full force and I'm back to having food in my throat for a long time after the last swallow. I imagine that I was just having a good day when I had the study, and I hear that happens a lot.

In fact, one friend who has had the fusion told me that she and others she knows who have had the fusion all had normal swallow studies, but post fusion, the issues they experienced with swallowing all went away. Since the Tethered Cord (or, hey, maybe it was the Invasive Cervical Traction?) surgery, my TMJ is gone, so it is reasonable to hope that the fusion would help swallowing problems too.

One thing that concerns me is my breathing problems. Especially when I lie down, I breathe very shallow and stop breathing if I don't think to keep it going. This is probably the biggest concern I have. And I realise now this could be related to the weakness I feel, and how badly I feel when I wake up each morning. If I've been oxygen deprived all night, then surely I'd wake up weak and feeling like the proverbial truck had run over me and backed up several times.

I've been very, very weak and having a lot more pain in the back of my head and below the waist. My arms ache all the time and my hands are often painful, burning.

My eyes hurt much of the time, something I realise now is attached to the occipital (lower back of skull) pain I experience so much.

Another pretty debilitating symptom is the fact that I fall into very painful sleeps when I am sleeping and sitting up.

I do not believe this is drug (pain med) related. Oh the fact that I don't sleep well at night contributes to early sleepiness in the evening...and perhaps the drowsy effects of Percocet or Norco adds to the mix.

BUT, if I lie down, my sleep is normal. However, if I am sitting up yet reclined in a chair and fall asleep, that sleep is painful and that pain wakes me up and it's ugly. I believe it's compression related. I go immediately into deep, REM sleep with dreams immediately present, and I feel burning in my brain and burning in my legs and feet and arms and hands. I try to fight it because I don't want to go to bed that early, but when I succumb and do go to bed, those painful symptoms are simply not present whatsoever. Supine position means less compression of nerves.

This happens every night now. It does not happen any more in the truck because I wear the Johnson CTO in the truck all the time now. I might get sleepy, but when I do, that sleep is sweet. As long as I have the vest on. (I am just experiencing the value of using this blog/journal! I will try sitting tonight with the CTO on in the chair while watching TV! A time when I would relish NOT wearing it, it will at least be interesting to see if I do not get pulled into that "long, dark tunnel" which I described a while back. I'd also like to know if I just don't even feel sleepy while sitting in the CTO. The hard part is the position of the TV and the challenge of my bifocals combined with the level that the CTO holds my chin! I'll report later to let you know how this worked.)

Bottom line, I'm hungry now for the surgery. I am wondering if people who are in a halo after a long time of experiencing these symptoms find a lot of relief. Most people are placed into a halo immediately following a trauma and therefore would not have the same sensation of relief.

Yesterday, I was in a grocery store and passed a young man (I was wearing my Johnson CTO vest) and as I passed him, he yelled out my name. I turned and he realised that my name, and the name of his wife whom he was actually calling, were the same. Then he asked me if I'd broken my neck. I said yes.

He told his story of when he was 17, playing football, he broke his C6. He was placed into halo traction for 3 days, then a vest like I was wearing for 4 months, and then a hard rigid collar for months. He said his doctor was a young man who had just graduated from Tufts, and that now, he is the doctor for the Olympic team.

I couldn't help but compare HIS treatment to my own, and my own injuries were so much more life-threatening. One of the professional bullriders broke his C6 this year and he is back riding bulls a few months later.

While this man had traction, CTO, rigid collar, I had a short, small, flexible collar with only velcro tabs in the back (no support at all in the back). And I had (as you all know- sorry) the 4 place C1 frx, atlanto occipital dislocation and rupture of all my ligaments. Sigh...old story...sorry!

Any way, bottom line is, I am looking forward to the surgery. I have journeyed to this point and it has been a travelogue of emotions and doubt. Thinking I could suck it up and not have surgery, just get better on my own and live with what I have. Not any more.

Now, there is also the concern that Dr. B will never feel my bones are good enough for the surgery. Or that he could try the surgery, put the test screws into me and not like the result and so close me up without a fusion. And I would have no hope for something better in the future. But that will be a long, rickety suspension bridge to cross when I get to it!