So, if you have been following the medical situation from Wife's blog (scroll down to find link on left nav bar), you know that our worst-case fears did not pan out. Thank God/Goddess/everyone. She has a syrinx, which is fluid-filled cyst in her spine, almost certainly caused when she broke her back 11 years ago this month. It has been dormant, until the past 6 months, or so, when random medical symptoms started popping up. She went to various docs to have symptoms checked, and even though she tried to tell them she thought they were all connected to a problem in her back, she was dismissed. Gotta love Western medicine, right?
Perhaps they need to invest in some good business performance management software that could help them be more efficient and actually look at patients as a whole person, not isolated systems. Of course, they would still need training in actually LISTENING to their patients. She was told her isolated symptoms "could not be related." As it ends up, yes, they can. The cyst presses on nerves. This causes tingling, pain, random cold-feeling spots, headaches, and other symptoms.....totally randomly. This is most likely a flair up that may or may not subside, and may or may not come back if it does subside, and may or may not get bigger or cause worse symptoms, and may or may not need surgical intervention at some point. Lots of definites here! It was actually kind of nice that her neurologist admitted that medical science just doesn't know that much when it comes to these things. He does know it could cause all of her symptoms though. That is a relief....to no longer feel like her body is falling apart in several different ways and have no idea why. It is really just one "nerve thing" - a big thing she will have to live with, but still, just one thing, which on the grand scale of possibilities could be much worse. It could also be better. I don't mean to minimize this at all. Sometimes the back pain, headaches and other pains are severe, and the numbness is very draining, at the least. Still...we are both relieved it is not a tumor pressing on the nerves in her spine and that she does not need back surgery at this point.
Thanks to all who have written expressing your concern for our family. We really appreciate your support!
7 comments:
Very glad you got some answers! You are ever in my prayers
I agree with you on the "whole person" issue. It is aggravating that the complete medical picture and history is considered. Even when the integrated computer systems allow it, most doctors don't bother to read anything except that part which they think (!!) is out of whack!! We really do have to be our own advocates in the medical system. We are the only ones who really care about us.
Thanks, Patti!
Lynilu - sad, but so true, and you have to advocate the hardest when you feel the worst. So unfair!
I'm so glad you got fast answers to what could have turned out to be a complicated and confounding situation. I, for one, am glad to hear a good medical story these days! :) Hope the cyst shrinks quickly and the numbness goes away. BTDT with the weird symptoms and it sucks.
Nothing enrages me like the ineptitude of the medical community (and this says a lot since I'm quite easily enraged). I'm sorry to hear you both had to go through so much b.s. to get your answer, but I'm glad you got it at last.
Good to have answers...at least to the extent we do. Now, we live with the uncertainty of what that means for the future. These things don't go away, but the symptoms can subside. They can enlarge and the symptoms could get worse. No one knows. Ugh.
What a relief. I have been crossing my fingers and hoping.
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