So the hubby and I went to see my PM doctor (Dr.S) this past Friday to discuss the details of my upcoming SCS trial on December 6th. The appointment went pretty well as we discussed what to expect during the trial & what my limitations will be. I will have two leads inserted into my epidural space, one for each leg. I've learned it's very crucial to talk to your doctor about the location & details of your pain, especially when considering a SCS. I've heard it is best to have a separate lead implanted for each limb in order to get the best coverage as well as so that you may control only the area giving you pain versus having the SCS on in other areas where it's not needed. I need coverage for both legs, from feet to lower back. Also, my left leg tends to be worse, so I may only need the SCS for that leg & not for the right at times. I want the ability to have that control. During the procedure, I will be awake but slightly sedated so that I hopefully will not feel any extreme pain but will be coherent enough to let Dr. S know if I'm getting sufficient coverage from the stimulator.
After the procedure which should last about an hour, I will get to speak with my St. Jude representative who will work with me to program the SCS in whatever way will help me most. I chose St. Jude as the company I wanted to go with because I found their site to be very helpful, user-friendly and I like their ambassador program, which I did use. I was able to connect via email and then phone with a 20 year old female who had a SCS implanted. She was very open to sharing her experience with me as well as advice for post surgery. It was also very relieving for me to hear her story & it made both of us feel like we weren't alone. It also helped that she was fairly close to me in age and we both were very active prior to our CRPS diagnosis. Though I'd never wish this disease on anyone, it's comforting to have someone to talk to that understands. Now every PM doctor / practice might be different, but I was given a choice of which company I wanted. I recommend doing research on your options and if allowed, choose the one that makes you feel most comfortable. The decision to get a SCS is a very big one, and the representative from the company that is providing your equipment, as my PM doctor put it, will become one of your best friends. They will be there to answer any questions, help fine-tune your system when needed and be there if anything goes wrong. St. Jude has a great reputation, so I hope I made the right choice.
Another choice I had to make was how long of a trial I wanted to do. I could do a 3, 5 or 7 day trial. Because I want to be absolutely sure this works, I opted for the 7 day trial. My PM doctor was a little apprehensive of letting me do the longer trial because I happen to have a compromised immune system & am on a low dose chemo pill to suppress my immune system. This unfortunately increases my chances for infection from the procedure, especially the longer I have an open wound (where the SCS wires will exit my back to connect to the battery pack). Dr. S has decided he will start me on antibiotics the day of the procedure & have me continue to take them during the trial. This will hopefully kill any harmful bacteria that may get inside the wound.
So that pretty much concludes the important topics of this appointment. If the trial works and I decide to go ahead with the implant, we won't have it done until after the new year. The holidays are just too close at this point & since Christmas is my favorite time of the year, I don't want to be totally out of commission for it. I just think of it as starting out the new year with a new beginning- hopefully one with a lot less pain!
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