Thursday, January 15, 2009
Oh boy. Lately I have been getting inundated by "patients" writing to me in support of this or that Doctor, or this or that form of treatment for our disease who promise a "cure" for our disease.
Here is the problem.
They aren't pain specialist, they have no published reports, studies, articles, or anything that shows their "treatment" has been reviewed by their peers and been shown to be an acceptable, credible, and successful form of treatment for our disease.
Most of these new "treatments" or "procedures" aren't even covered by insurance.
So what is a patient to do? What is someone with CRPS, who is desperate for pain relief, desperate to have en end to their pain, who is being told by a medical professional that they can end their suffering, what are we patients to do when confronted by such a choice?
All too often we become so desperate for relief that we are more than willing to try anything. We don't always think through the consequences, the long-term ramifications, the possibilities for problems that can result due to this procedure, treatment, machine, protocol, implant, etc.
I know it isn't the easiest thing to do but we have to stop, think, investigate, and research, ask, and think some more.
1) Investigate both the physician and the procedure, treatment, device, etc. as thoroughly as possible. Use the internet, check out reputable websites; American RSDHope, RSDSA, NIH, WebMD, etc. Use these unbiased sources in addition to the Drs or companies own sites so you get a complete picture.
2) Talk to patients. Find a way to talk to patients who have had this procedure 6 months, 12 months, 24 months, and more, ago. Find out if they are still experiencing relief and/or if they have had any complications in the meantime. You may find that some of these treatments show early promise that fades quickly.
3) Talk to the loved ones of these same patients. They will be less likely to have a "dog in the fight" so to speak and will be able to present you with an outside-looking-in view of how the treatment and results went.
4) Is the treatment/procedure/device covered by insurance, WC, Medicare, etc.? If not, why not?
5) Research the Doctor. In this internet age that is very easy to do.
The bottom line is that patients need to protect themselves. Whatever you do to your body, or allow to be done, has long-term consequences, especially with CRPS. Even something as simple as a blood-test can cause an exacerbation of the disease so that should tell you something. It is an ornery disease :)
There are some wonderful Doctors, nurses, and physical therapists out there who spend every day trying to alleviate our pain. I have been fortunate in my life to have met quite a few. If you are reading this, thank you :)