They say hindsight is 20/20. After you know the experience and outcome, it’s easy to say hypothetically whether you would make the same decision again. To have gone through everything, finally start to be out of pain and take your life back, and know that you don’t have to do it again, the hypothetical question is easy to answer. But what happens when that question isn’t hypothetical? What happens when you are faced with more neuropathy and have multiple treatment options? That is what I am faced with right now, and the answer is easy for me: add another lead to my DRG stimulator. The sooner, the better.
Now, I don’t particularly want to have another spinal surgery and weeks/months of recovery, but I am choosing to go through it all again because I know that once all is over, my pain will be managed most likely without the need for any oral medications or additional pain management procedures. I thought this would be a great opportunity to share my experience recovering from the DRG surgery and some advice on how to make the process easier.
- Prepare your body as much as you can prior to your procedure. I highly recommend working on core strength, glutes, and quads. For at least 6 weeks or so (your surgeon may recommend more or less time), you will have to avoid bending, twisting, and lifting more than 5 lbs so that your leads don’t migrate. You will be doing A LOT of squats when sitting down, standing up, trying to reach something from the ground or a low shelf or cabinet.
- Get a grabber. I used a grabber designed for people in wheelchairs to help me reach things and pick things up without bending (including one awkward day where I dropped my cell phone behind my bed while my alarm was going off; it was like some evil adult version of the crane game). I also moved pots, pans, and appliances like my slow cooker and blender permanently onto my kitchen counters because I knew I wouldn’t be able to bend down and lift them up out of my cabinets for several weeks.
- Train yourself to sleep on the side opposite of your future implant. I am a back sleeper, so it was difficult for me to immediately come home after surgery and try to sleep on my side while also dealing with the discomfort of surgery, waking up in the middle of the night for pain meds, etc. Next time around, I plan to train my body to sleep on my side so that it’s one less variable to deal with while recovering.
- Get loose pants and shorts, both for lounging and also some that would be socially acceptable for going to work. Your implant will probably be somewhere in your “hip,” and for awhile it will be sore with anything like a waistband pushing on it. Ice helps, especially in the first 1-2 weeks.
- Avoid long road trips until your back has reached a level of comfort where you can sit in the same position in a confined space for a long period of time. I had a wedding to attend about 4 weeks after my surgery. It was about a 3 hour road trip, but it was for one of my best friends. I wasn’t going to miss it. However, I was in so much pain from the road trip that I was miserable the entire time. I wanted to be there for my friend, but I couldn’t dance or mingle for long periods of time or engage in most of the other aspects of such a monumental social gathering. I gave up comfort to be there for my friend, but if you have avoidable circumstances, I highly recommend re-arranging your schedule until farther into the healing process.
These are my recommendations from my experience with the implant surgery. Again, your doctor may have different recommendations, or you may find something else that works for you. For my revision, he will be adding a lead and will have to open the pocket to access my implant, so the healing process and timeline will be very similar. I’m hoping to get this done in May. I would do it tomorrow if I could, even knowing the pain, discomfort, awkwardness that’s going to come with another spinal surgery. Out of all the options, I am choosing the DRG, not as a last resort, but as a first-line treatment. From my research and experience with my right foot, I have seen so much evidence of this as a superior pain management procedure for CRPS and my type of neuropathy.
So to anyone considering this surgery who may be skeptical of my positive outlook because I’m on the other side, remember, I’m still a chronic pain warrior, and when faced with the question of whether I would choose more conservative treatment options or adding a lead to my DRG stimulator, I am choosing to go through all of this again, because it’s worth it.