Written by Debbie ONeal for the RSDSA blog.
The first thing that pops into my mind when I hear “surgery is needed “is pain. Then it jumps to will it spread? Then I worry about why I need surgery to begin with. I know a lot of us have horror stories about going to the hospital and having surgery. My way of thinking in my 14 1/2-year journey with RSD/CRPS is you have to respect it. If you’re hurt you give yourself time to heal. You baby your injury. Our syndrome effects our autoimmune system which effects the way we heal. When having surgery to me it’s imperative that you keep the RSD/CRPS calm because it’s your best chance at healing as best we can. How do we keep the RSD calm and from flaring? You need to be on a pain pump immediately following any surgical procedure & a few days following procedure depending on the type of procedure you are having. This is because any trauma to your body can cause a flare. So how do I make sure the doctors and nurses can do their best by me? I educate them. Trust me when I say that sometimes when a doctor says he knows what RSD is doesn’t mean he understands how it’s treated or the complications that come with it.
For little over a year I was starting to get pain in my pelvic bone on my non-RSD/CRPS side. At first, I thought it was residual pain from 2 incisions that we’re made in my right upper thigh to put in a stent in my heart artery because it would come and go. After last year’s CRPS/RSD Awareness Walk in Long Island I thought the pain was from that day. Eventually I just thought the RSD/CRPS had spread. I mentioned it to my pain doctor and primary care doctor and that was pretty much it. The pain got so horrific that I started spending more time in bed until I was practically bedridden. I had been having issues with my bladder too and was seeing a urologist for that. Long story short she ordered a renal ultrasound which lead to the reason for my pain in my pelvic bone. I had what is called a Staghorn Calculus which is a giant kidney stone which branches into the filter system of your kidney. It is extremely painful. It is right below RSD/CRPS on the McGill Pain Scale. The surgical procedure took 2 days. I was in the Stony Brook Hospital for 9 days. Everyone I came in contact with at the hospital was great. I educated my team of doctors and nurses who were taking care of me during my stay in the hospital. A student nurse saw the material I had given out to the staff and she came to my room and asked me about RSD/CRPS. This actually prompted her to lead a class after talking to her professor using the material I had given to the staff.
When you have a condition that is not well known, you must be your own Advocate. It’s not always easy, especially when you are dealing with the kind of pain levels as I do. Pain effects everything and can cause brain fog. So, you must make a list of what needs to be done prior to surgery and after. It’s hard to explain that fear to someone who knows nothing about RSD/CRPS or who has never really experienced intense pain. So, I start thinking how can I educate my surgeon and the team of nurses who will care for me. I know that the responsibility lies with me because let’s get real who else will do it. For me, the third surgery was the charm. I also know a lot depends on the people who care for you in the hospital.
The first person I needed to educate was my surgeon. From the RSDSA website, I printed out information on RSD/CRPS, the Hospital and Emergency Room protocols and the wallet card. For him I also printed out the link and information about the free accredited courses for Doctors, Nurses, and Health Care professionals that he could take. I highlighted the links for him too.
A week prior to surgery I followed up with the surgeon’s office, my primary care doctor, and my pain management doctor to make sure everyone was on board in regards to the pain pump and me also staying on my regular pain medication while recovering from the surgery.
You also have to educate the hospital staff who will be taking care of you. So, for them, I printed out Hospital Protocol, Emergency room protocol and the wallet card back and front on what RSD/CRPS is. I decided to go with these 3 because it had enough pertinent information and wouldn’t be overwhelming to read. I feel if that if you overload them with material, they won’t read it all. Sometimes less is more. I printed out 10 copies, stapled the 4 pages together and put them in the folder with the medical information I needed to bring with me to the hospital.
I gave it to the nurses in the procedure area, they in turn put it on the top of my folder. I had them put red bands on my RSD/CRPS arm and leg so anyone treating me would know not to touch that side. When I got to my room in the hospital, I gave the nurse who was taking care of me 2 copies, one for her to put with my chart and one for the nurse’s station. When the team of doctors came in the next morning, I gave them a copy. When the pain management doctor came in, I gave her a copy too. I was very lucky that everyone was so receptive. Let’s be realistic that doesn’t always happen for everyone.
After I was discharged, a nurse came to my house twice a week for 2 1/2 weeks and a physical therapist came once. I educated them too and gave them the same printouts.
- If a surgeon isn’t open to learning about your condition, find one who is.
- Make sure your doctors talk to each and they are all aware of what’s going to be done.
- Make a list. I keep a pad and pen in my living room, kitchen and bedroom so when something pops in my head that I don’t want to forget I can jot it down.
I hope this helps others have a positive experience the next time they go to the doctor. All the publications I mentioned can be found on RSDSA’s Website.
Remember YOU are in control of Your Treatment. Always ask questions and if something doesn’t seem right get another opinion. If you’re not comfortable having something done, then say so. A good doctor will always listen and respect you.
You can find all the pamphlets on RSDSA Website or they can mail to you.
https://rsds.org/empower-yourself-with-the-latest-crpsrsd-information/ or call 1.877.662.7737.
The accredited courses on CRPS for MD’s, Ph.D.’s, and RN’s has two programs that are being offered on the AAPM website. These accredited courses include: a “Comprehensive Overview of Complex Regional Pain Syndrome” as well an In-Depth Look at CRPS: From Diagnosis to Treatment as Illustrated by Case Histories. Philip Getson, DO, is the presenter for both of these programs.