Quote:
Originally Posted by BioBased
I am posting this new thread in order not to hijack Greystreet's.
Visioniosiv, your response to my post about conflicting medical advice made me wonder what we can do about this. The money spent on bad medical advice is considerable and a great loss, but it cannot compare to the considerable pain it causes along with the loss of quality of life.
In my case I believe the ignorance of medical personal prevented early diagnosis. If even one had suggested CRPS as a possibility I would have researched and maybe have prevented it from being a chronic condition.
I also do not understand why there is no decision tree to follow for CRPS. You would think in the Internet age, all doctors would have a computer system to help them diagnose better with a handout.
I am still reeling from the paucity of information I was given regarding brain surgery and follow up. I only learned from a follow up letter that I would need a stent as well as coils, along with lifetime aspirin use. The letter also referred to me as a "he" and mentioned controlling a collagen vascular disease that as far as I know I do not have.
I would like to trust the professionals, but with every interaction I find a new reason to be skeptical.
The bones in my foot and ankle are demineralizing and the pain is through the roof. I have constant throbbing in the back of my thigh and that adds to my misery. I am spending a fortune on healthcare, but I feel like I am my own doctor.
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Hi BioBased. Please forgive me for the late response; I've been out of town.
It sounds like you have every reason to be skeptical. I'm so very sorry to hear all that you have been through. I do agree that an early diagnosis is helpful. I was fortunate to have that in my case (although it was already after I'd self diagnosed via Dr Google after obsessing over it for many weeks post surgery.)
Ironically, even though it was caught it early, none of the modalities prescribed did anything whatsoever as far as improving my physical condition. These prescribed modalities essentially included: a) drugs, and b) nerve blocks. And if A and B don't work up front, we'll try different A's and more B's. And if that doesn't work we'll implant a stimulator in your spine. No mention of PT or OT. Counseling for potential depression was also offered as a future option.
Sorry doc - but drugs don't heal this; they only mask the pain (as well as the actual cause of it by further complicating the picture with side effects). And I'm not going to let you inject anything into the lumbar area of my spine; the RSD was triggered by surgery in the first place and I'm not really keen on seeing if further invasion will do the trick.
Not to say that drugs and nerve blocks don't have their place. Especially in acute care settings. But as a primary treatment plan? REALLY?
Everything useful I ever learned about RSD I learned online.
So as far as what WE can do about this - we're doing it right now. We are posting and sharing real information through our own individual anecdotal experience. Sure - they're subjective - but
what isn't?In my opinion, there is more useful information on this site alone than one can accumulate by going to med school. Do I know this for a fact? No - I've never been to med school. But what I have done, is actually lived with a chronic disease, and my experience was that my own research and applied remedies were far more effective and far less invasive and far less mentally incapacitating(ie far less DANGEROUS) than what was recommended and prescribed by the 15+ doctors and specialists I saw early on in the diagnosis.
You ARE your own doctor. The medical field is supposed to be here to help us make OUR decision about what to do with OUR body, but unfortunately it is not set up to be very effective in much beyond acute care. Here in modern medicine, we're great at: surgery, splinting, and drugs. Life expectancy is much longer, but what is the actual quality of life?
In many cases, the current professional treatment plans actually exacerbate existing symptoms, and create entire new ones. And it becomes this compounded Gordian Knot where the patient is suffering and no longer knows who to believe or trust.
The challenge is that the majority of folks here are already at Threat Level Orange, or they wouldn't have come here in the first place.
In this case, ANYTHING that calms the sympathetic nervous system is a catch-all positive treatment for RSD. That's the starting point.
Ultimately we are the ones responsible for our own individual health. Ideally, doctors are paid to be there to support and assist us in the healing process - but they can't wave a magic wand and cure us (at least as far as as RSD goes.) It sucks but there's the rub.
So it's on us to gather information, share our successes, and support one another.
There are many alternative modalities out there that helped me; I'd be more than happy to share specifics on what worked for me.
