I have type 1 diabetes for over 10 years and also have had reflex sympathetic dystrophy (RSD) for over two years now. I have tried numerous drugs and pain killers for the RSD with no success. Just recently, I tried the spinal cord stimulator which failed to work on the RSD pain also. I am hoping to take one more try of a continuous epidural pumps for four days which worked a year and a half ago. The one doctor who had mentioned this treatment to us will no longer handle my RSD and will not do the permanent epidural. Should I be considering the permanent epidural pump?

I only have months left with my insurance and I am thinking of scheduling an appointment to consult with the endocrinologist on this procedure to make sure that she is okay with it. Her opinion may not sway our decision because of the insurance issue, but I do feel I should consult with her. What would you do if this were your child or yourself and you were in this situation?

First, I truly believe that patients have to be their own advocates. There are too many roadblocks to get in the way. Second, this is a chronic disease that has caused you a lot of pain and suffering. I think it is reasonable to pursue this if other treatments have not worked. Third, I think it is helpful to involve your endocrinologist since she will be following you over time. She can give you more insight into what will impact your diabetes and what won’t.

JTL
Additional comments from Dr. Tessa Lebinger:

The only concern for someone with diabetes I can think of about a permanent epidural pump is possible increased chance of infection compared to someone without diabetes. I would discuss the possibility of this with the anaesthesiologist.

Reflex Sympathetic Dystrophy (now called Complex Regional Pain Syndrome Type I) is a poorly understood disorder. No one knows what causes it, how to definitively diagnose it, or the best way to treat it. I assume neuropathy from your diabetes has been ruled out.

Whatever treatment you use to decrease pain, remember to continue with frequent physical therapy. I know people who have regained full function of affected limbs after years of physical therapy. I don’t know what part or parts of your body are affected, but sometimes the physical therapists have to be very creative and actually reteach you how to use those parts of your body properly.

TGL