Okay, twice I typed out long posts and twice, when I hit the "submit" button, the messages were erased and lost and just plain GONE. It's frustrating!
I finally did, this morning, what I should have done all along: type, first, the post on a Word doc and then paste it onto the blog text box. So, here is what is going on in the neurological world of Virginia...
Ponderings about surgery, Sunday, Oct. 23, 2011
I have become "used to" the fact that my arms and hands are weak, and that goes for the rest of my symptoms, too. The symptoms are not mere nuisances, they point toward the progression of residual pains and signs that were left to me after my injury 7.5 years ago.
This morning, as I brushed my teeth, I thought about the times, at night, that I forego brushing, because I feel too weak to wield a toothbrush. And I noticed the painful weakness in my arms after brushing my teeth and a couple of quick swipes with a comb through my self-cut hair. My arms hurt and are so weak. This is definitely a progression.
Another one I can think of right now is the distinct feeling I get each day of my head, all 12 lbs of it, being too heavy for me to hold up any longer, and I seek out someplace, any place, to lie down and take away that stacked weight upon my spine and neck. Each day, I lie down for 2 hours or more, and the sensation of relieving that weight (of my head) produces often a euphoric reaction. An uncontrollable "AH" of sweet release.
[This reminds me of the "invasive cervical traction" I had done in NY several years ago. I've written about it all back when it was done, in November of 2007, but the procedure went thusly: They put you out for a few minutes while they put a halo on you, with the 4 screws going into your skull (through the skin); Then, they wake you up and sit you up in bed, and hook the counter balance weights onto the top of the halo, so they can pick you up by the halo. Then, they start stacking weight and asking if you can handle more, or if you reach a point of euphoria. And most people DO experience euphoria when that weight is removed. My husband's cousin in NY described this procedure as "draconian," and I would definitely agree!
I sat up in that position with the counter balance of 50 lbs holding me for an hour or so, while a CT machine went around me taking pictures and then several specialists pored over the resulting imaging on computer monitors nearby. When they had reached their conclusions, one of which was seeing for the first time that not only had I broken my C1 into 4 pieces, but I also had suffered Atlanto Occipital Dislocation (internal decapitation) at the same time, they removed the weights, and when the weight of my head once again was carried by the C1, it honestly felt like someone had placed a 50 lb. sack of feed on the top of my head! It was amazing how heavy my head felt, and if it happened to you, you would be surprised, too!]
Today, I definitely can feel the wobbliness of my upper C spine. When I'm well-rested and fresh, it is not as pronounced, but after being up and about for a few hours, each bump in the pickup, each snappy turn of the steering wheel (my husband drives, I do not drive anymore) keeps me well-aware of my cranio-cervical instability, and each bump or
turn adds up collectively until, all tolled, I have that dire NEED to lie down and get the weight off. I am always very aware of the weight of my head.
What do I hope to get from surgery:
The ability to drive again. Without a fixation, if I drive, my head is held in an instinctual,
strained, self-balancing fashion. In order to focus and see what needs to be seen, I hold my head still and steady, and this effort is a great one, which, again, collectively adds to the flareup that I will feel the next day, or that night, after driving.
So, I'd like the freedom to drive again. At almost 60, I can't help but think about my future and my "silver" years ahead. My husband is 11 years older than I am. We've been married 38 years this year, and it is my desire to be able to take care of him as we age, and not be a burden upon him. I would like my independence back, I have many years to live if the Lord "tarries."
Having lived with this instability for 7.5 years, I know things about it that no doctor can understand, and I know the tiny, the subtle, the secret ways I am affected by things. And I have a sense of what will help me. IF my neck and skull were affixed, I think that it will keep me from moving my head so much. I am told that I move my head around a lot when I am talking to someone (something I have, for years, tried to control). With that fixation, it seems common sensible to me that it would prevent me from that motion in the CC junction! It would control my movements in ways that my desire to control them or a neck brace can never do. And I think with a distinct "AH" how good I would feel if the movement at the CC junction were STOPPED! After 7.5 years? It seems like a heavenly thing to achieved a FIXATION that will keep things from moving around, especially my own movements as I do light housework or garden work, or even just chatting with a friend. The other day, I talked with my sister for 2.5 hours on the phone. Even though I was using a light-weight headset on the phone, just the action of holding my head relatively still and using the muscles and ligaments in the back of the skull that are put into action when I talk, altogether add up to a severe reaction to the seemingly benign action of talking! With a fusion, I believe I could talk again to family and friends!
I do not care about any loss of range of motion. I have restricted those movements of my head for years now. Right now, I love the thought of having bolts and screws and plates holding my head right where it needs to be! It's now, or never. I should have gone for it sooner, but in retrospect, I did TRY. I went to New York to see Dr. Bolognese in June of 2007 with every intention of getting a big fusion! I was pre-admitted to the hospital, had the hospital bracelet on my wrist, my friend from NY had already arrived in order to help me in the hospital post-op after my sister would have to leave to go back to work in NH.
I had the motor running and my foot on the gas! Until my doctor decided against me and basically dumped me as a patient!
And, naturally, that experience warded me off of neurosurgeons and surgery for four years now. It's understandable that I became afraid of surgery after that NY experience, but on the other hand, it's time now to let go of the fear and move forward into a chance for improvement.
I take gobs of pain pills. Nortriptyline, Oxycodone, Oxycontin, Cymbalta, Metanx, Lidoderm patches. And I use a lot of iced gel paks. I have a mobility scooter. I KNOW, without a doubt, that there is no natural healing for me. I am not going to see any improvement without mechanical interaction. No, instead, I will see progression, an increase in pain, weakness, and the many neurological symptoms I experience that are due to compression of my brainstem by the C2 odontoid bone.
IF my work comp insurance authorizes a consult with a neurosurgeon, my next journey will begin. A trip to Portland, OR for the consult. I imagine a myriad of CT scans and MRIs will need to be taken and studied. I put my trust in God and my head in the hands of Him and the neurosurgeon, if surgery is offered. I will try and keep the reader posted.