Thursday, January 15, 2009

CRPS Treatments

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 :)

peace, Keith


3 comments:

Barbara Kivowitz said...

This is such important advice. Pain can drive you to do anything get some relief. I know I tried some fringe things - because I just had to find out if they could help. But I drew the line at things that might do me more damage.

Jean said...

Keith, My 19 year old daughter has been suffering from RSD for 7 years. She has been treated since day 1 by Dr Hooshmand and Dr Hashmi, now obviously only by Dr Hashmi. She has never had any invasive treatment of any kind for her RSD. We would like to talk with you about the ketamine treatment that you had. How can we make this happen?

Keith said...

Jean, you can contact me through the American RSDHope website, use the email - RSDHope@mail.org

I will be happy to share. Have you read the articles I wrote about my experiences with ketamine? They were very detailed. They are in the "Ketamine, Patient Stories" section of the website, big blue button on the main page.

Remember, the low-dose version, which is what I had and what IS allowed in this country is very different from the coma ketamine which is NOT allowed in the USA. There have also been some serious situations with the coma lately including one woman in Germany who never came out of her coma. She developed a serious infection. She has been flown back to the USA recently but still in a coma. We are all praying for her.

You can read her story by going to the What's New section of the website, medical articles, or go to http://www.rsdhope.org/Showpage.asp?PAGE_ID=170&PGCT_ID=4733