By Keith Orsini, American RSDHope

Many CRPS patients are faced with this question. Is it better to deal with the pain of an additional injury or risk surgery and the possibility of the disease spreading and/or worsening? It usually comes down to the question of whether it is optional surgery or not. If it is not optional, then there are precautions you can take. 

Many years ago the answer would have been the same but it would have been more difficult because fewer Doctors and nurses knew about our disease. A lot has changed since the year 2000. More medical professionals than ever before are well-versed in CRPS and the issues that can arise from surgery. But, having said that, it is vitally important that you as a patient prepare in every way possible to reduce the likelihood of a problem.

Surgery for CRPS patients, especially those of us with systemic CRPS, is a difficult proposition but not an impossible one especially when faced with a problem that can only be fixed surgically. In those cases where it is medically necessary there are precautions you can and must take to lessen the chances of problems afterward.

1) Be prepared with information - In your pre-surgery discussion with your anesthesiologist be sure to bring either some of our CRPS brochures or some printed information regarding CRPS from either our website or the RSDSA so that everyone who comes into contact with you will be sure to know about your disease and take extra precautions. Don't assume that he/she will be familiar with the disease (although he absolutely should and probably will be.

2) Bring an extra set of eyes and ears - Bring someone with you to this appointment and be sure it is the same person who will be with you the morning of the surgery so that they know to follow through on all of your instructions, have them write down everything or keep your list with them. Make a folder up for them prior to going in and go over it with them. They can even attach it somewhere on the gurney or hospital bed. 

3) Communicate with the staff about your needs - Make sure the Anesthesiologist has the pre-admit nurse and the post-surgical nurse write on all paperwork and charts, the following information; (his needs to include the chart for the Operating Room); 
a) Where you cannot be touched, rubbed, etc. 
b) If you cannot have a blanket/sheet on certain parts of your body, due to allodynia.
c) If you get cold (the units are usually cold and the OR's are always freezing), let them know, they have warming blankets.
d) That they need to exercise great care in how they position your body there with regard to your CRPS.

Let them know if you are experiencing pain or nausea.  

When doing the IV prior to going into the OR (or anytime blood work is done actually) they need to;
a) Use the smallest needle possible.
b) Have it done by the most experienced person on the floor, preferably someone from the Anesthesia department.
c) Warm any IV fluids prior to them going into your body.

These things will reduce the probability of venipuncture CRPS; of your existing CRPS being aggravated by the needle insertion; of the IV fluid causing your limb temperature to drop; and of the blood vessels contracting. All causing a spike in your pain that can last long after your surgery is over.

4) Medications and Medical issues - Bring all your medications with you (be sure they have a list with dosages and strengths), what parts of your body are affected, what medical issues you have had in the past, etc.
Depending on the type of surgery, sometimes patients can get a nerve block prior to or after surgery, or they can have them use a ketamine drip during surgery; these all lessen the impact on the CRPS.

5) Don't leave the facility until you are completely comfortable doing so. The best hospitals will not rush you out until you are ready. Make sure someone drives you home and that someone is there when they explain any follow-up instructions, procedures, etc. Chances are between the CRPS and the anesthesia you won't remember everything they tell you.

6) If you have any problems after you get home call the facility where you had your procedure done, they should have given you a phone number. Don't try and be brave if your pain is higher than you expected in the days that follow. If you feel it is higher than it should be talk to your Doctor and/or nurse. They aren't going to laugh at you or call you a crybaby. It is one thing to be tough, another to be smart.

Lastly, get plenty of rest and don't over-do. Follow your instructions. If people offer help, take it. 

The important thing is that as many people as possible need to be instructed in what exactly CRPS is; pre and post surgical nursing staff (bring as many brochures as you can to be handed out by the person who accompanies you is what I always do), and don't be afraid to share what you know. I have never had any nurse say "We know, we KNOW already!" They have all been either eager to learn or have already learned from a prior visit. Many even go and visit the website after my stay and I have even had a few talk to me about a friend of theirs who might have the disease. 

If you have any questions at all about surgery and CRPS, or any type of chronic pain, be sure to discuss them with your Doctor. These are just some suggestions we have come up with based on recommendations other patients and Drs. have passed down to us over the years. If you have additional ideas, send them to us so we can add them to this article!

Peace, Keith Orsini
American RSDHope
2012 copyright