Monday, March 18, 2013

Howdy folks! Remember me? I'm the one who was keeping this blog going for 6 years...only during the last year, I've been doing a very poor job of keeping this blog! It's been so long since I've posted that it took me a half hour to figure out how to sign back into it so I could post! Almost a year with no posts! I never thought I'd let it go that long. It would be perfectly understandable if the followers of this blog, upon seeing no posts from me for this long, have wondered if my Feb. 17, 2012 surgery at OHSU in Portland had completely healed me and I stopped blogging because I was too busy training horses, sky diving, mountain climbing and taking Lance Armstrong's place in the Tour de France! Alas, that is not the report I am able to give here today. My pain seems to have gone right back up to all-time high levels for me, and the weakness I have has gotten much worse. I have trouble keeping up with housework; I am unable to fly back to see my 88 yr old mother when she is sick or in need of me; I look at our yard (it being close to the first day of Spring, 2013 and the crocuses are all up and the daffies are started to unfurl) and know I simply cannot handle it this year, without intervention from the Lord. The fusion surgery with the long transarticular screws going up through my C2 up into my C1 with a cadaver-bone patch (or chinking, so think about log cabins) stuffed between the back of my C1 and the skull base (subocciput region)with opes that it would cause bone to appear and knit together has all been a wonderful success! I had ZERO complications with the fusion. I have not worn an Aspen neck collar or a CTO brace since I left the hospital a tad over a year ago. Dr. Ragel said I didn't need it, and so I threw it into the back seat of our Dodge pickup as we left the "Rose City" and motored our way home. I found tho that I am very uncomfortable driving. I don't necessarily feel like a lot of range of motion was taken from me, but I just cannot turn my head over either shoulder and check for clearance as I begin to back up a vehicle. This scares me out of my wits! I don't want to back out into traffic and get hit; I don't want to run over a child on a bicycle coming up behind me; I want to be safe, and driving feels much less safe to me now. I can nod or shake my head as I talk with people, something I had learned by rote "not to do." If I did do that pre-surgery, I would suffer big flares of pain for days. It seems like these days, I am able to do that, (such a small thing, isn't it?) but other things bring on those pain flare-ups quite easily. Bending over and doing anything with my arms, like emptying a dishwasher, making the bed, painting, steam-cleaning a rug, etc. I am a true example now of a person with an invisible disease! I don't look sick, but I am definitely not "okay!" People tell me I look great, people who haven't seen me in awhile. I have gained a lot of weight and of course, I'm not liking that, but it is the least of my difficulties. I found an article finally that perfectly describes the condition that plagues me. It is from webmd, published by The Cleveland Clinic. I've known for years that the all-over, chronic, constant, gnawing pain I have is called "Central Pain Syndrome." I am sure I must have posted about this condition at least once in previous blog posts. Just to catch up any new readers (or readers like me, who forget anything that occurred "short term!") our bodies have two nerve systems. One is called the Peripheral Nerve, a good example of PNS (ie Peripheral Nerve System) is stubbing your toe; stabbing a rose thorn into a sensitive finger; cutting your hand with a kitchen knife by accident, etc. These things ALL hurt like the dickins. Then, the human body has the Central Nervous System. This is the term for the nerves within the brain and spinal cord. This is a different kind of pain. It occurs, often, after a stroke; in people with MS (Multiple Sclerosis); or after brain injury. Years ago, perhaps 3 months after my broken neck injury, a wise neurologist finally ordered a brain MRI, and on the report of that imaging was this finding: I had several lesions on the brain that could point to a demyleniating disease (like MS), a stroke, or brain trauma. Since it was only 3 months post injury and I was healthier than a healthy horse before the injury, it was easy to place the blame on those brain lesions onto "trauma." And that still holds true. Here is an excerpt from that short article from webmd.com about "Central Pain Syndrome:" Central pain syndrome is a neurological condition caused by a dysfunction that specifically affects the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. The disorder occurs in people who have -- or who have experienced -- strokes, multiple sclerosis, Parkinson's disease, brain tumors, limb amputations, brain injuries, or spinal cord injuries. It may develop months or years after injury or damage to the CNS. The brief article next states the symptoms of CNS, and does a poor job of that! I could add so much more to this statement of symptoms. I would add "almost constant itching above the point of spinal cord injury." My scalp and my face itch "almost always." I try to take a couple Benadryl to help cover it but that really hardly ever works. At night or during the day when trying to nap, I feel a stab of painful itching on an eyebrow; next, up in my nostrils; next, behind one of my eyeballs or under the lower lip or just in front of my ear or.....It often interrupts my sleep and I hate it. Years ago, while perusing the great "central pain" website (ie www.painonline.com ), I again noticed that itching above the level of spinal cord injury and asked the webmaster if itching was a common symptom of CNS, since that is something that plagues me and he responded a firm YES! The webmd article offers little hope for treatment of CPS: Central pain syndrome is characterized by a mixture of pain sensations, the most prominent being a constant burning. The steady burning sensation is sometimes increased by light touch. Pain also increases in the presence of temperature changes, most often cold temperatures. A loss of sensation can occur in affected areas, most prominently on distant parts of the body, such as the hands and feet. There may be brief, intolerable bursts of sharp pain on occasion Finally, there was a statement on this website that really caught my eye. It was a comment upon the fact that stress and high emotions can cause particularly bad flares in pain levels for the sufferer of CNS: Pain medications often provide little or no relief for those affected by central pain syndrome. However, some antidepressants and anticonvulsants can be useful in treating central pain syndrome. Doctors recommend people with the condition be sedated and the nervous system kept quiet and as free from stress as possible. So, there it is in black and white. A life sentence of constant pain. CPS also causes any small injury (banging my elbow or getting a paper cut or cracks in my skin on the ends of my fingers, etc) to morph into pain of a much higher level than when experienced before my broken neck, before CPS took over my life. The statement that stood out the most for me in the webmd article was this one, the last sentence in the piece: Doctors recommend people with the condition be sedated and the nervous system kept quiet and as free from stress as possible. "Doctors recommend people with this condition be sedated..." "sedated"....and "the nervous system kept quiet and as free from stress as possible." Let me tell you, NO ONE else in my circle of friends and family can really grasp this condition. I don't blame them! They deserve an award for being as understanding as they are. Yet, I do try to explain it to them, which ends up with me feeling like a hypochondriac or someone seeking attention. I (perhaps unfoundedly) envision them thinking, "Virginia needs to let this thing go and move on with her life!" And, oh, how I wish I could. But, I find myself trying to explain why I hurt, how I hurt, where I hurt (all over!), not to get their sympathy or attention, but to try to get some feedback from them that they understand.

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