Adventures in receiving a Boston Scientific spinal cord stimulator implant.
My experience with the Boston Scientific Precision Spectra Spinal Cord Stimulator
On December 14, 2018, I received my temporary spine cord stim implant from Boston Scientific and embarked on a six-day trial to ensure that I would experience a great enough change in my quality of life and pain management to justify moving forward with the permanent implant.
There aren’t many medical implants that a patient can “try out” before committing, so it’s really pretty neat. This device is designed to send electrical pulses to your spinal cord to overstimulate it and cut off pain signals from the affected body part(s) to the brain. Instead of feeling pain, you feel a sort of tingling sensation. If you have ever used a TENS unit (and I actually strongly recommend trying this one) for pain management and muscle rehabilitation, the feeling is very similar… except it’s on the inside of your body.
The main difference between the temporary spinal cord stimulator implant and the permanent implant is that with the former, the electrical leads and battery pack are on the outside of your body, with small holes going into your spine from where the leads extrude. For this reason, the patient is at high risk of infection during the trial, and I had to take antibiotics daily for the entirety of the trial and for a few days beyond.
Something I apparently failed to make clear prior to the temporary implant:
They take it back.
After the six days of taking it for a test spin, the patient is at too high a risk of infection to leave the temporary implant in place, so they have to remove it. For some patients, this means having weeks or even months between the trial spine cord stim implant and the permanent implant. I was fortunate because my trial implant was removed on 12/19/2018 and my permanent spine cord stim implant was placed on 12/28/2018.
However, I would love to warn anyone else out there to beware the rebound pain that comes with having the temporary implant removed. For four or five days after the implant was removed, I was in hell on earth all over again, in regard to my pain levels. It felt like I had been transported back to 2017 or early 2018. It was awful. The doctor, techs, and nurses did their part to warn me that I would experience the rebound pain but I don’t think I was truly prepared for how bad it would be.
Some things you may not be expecting or know to ask:
When you move, your leads move.
Especially during the trial implant, when the electrical leads are not anchored in permanently or stitched into place, the leads will shift and move as your body moves. If you cough, laugh, straighten your posture, etc. you will feel the stimulation much more intensely. It can sometimes take you by surprise! It’s not painful, just intense and surprising.
Get your Vitamin C & Zinc
I didn’t realize how important this was, especially for patients with Complex Regional Pain Syndrome (CRPS,) until I went in for my post-op appointment on Friday and my blood pressure was through the roof, I was sweating profusely and shaking, but I had no fever. I had been eating a lot of protein but not enough carbs and fats. Dr. Unicorn told me to double up on rest and fluids, as well as my vitamins because it was likely that my immune system was in overdrive. I did as instructed and felt wonderful by Saturday night.
Know which pain meds work best for you
I try to avoid narcotic and opioid pain medications in general, it’s a personal care choice. However, when undergoing surgery or an invasive procedure, I will take them. During my trial implant, I took Vicodin to help with the soreness in my back from the incisions. Unfortunately, that gave me rebound migraines.
When I had my permanent implant placed I asked Dr. Unicorn if I could have different pain medication to avoid the migraines, and he prescribed oxycodone. The oxycodone did not give me any migraines, although I did wake up with a migraine in the recovery room after surgery. (I vaguely remember crying over the pain in my head and my left incision.) However, I did feel much more “stoned” with the oxycodone. Luckily, I only needed it for about 5 days post-op.
Something to note about the permanent implant surgery is that the battery pack is about the size of an oreo cookie. The doctor has to make a small pocket out of the fascia tissue in your love handle area, wherein to place the implant. This means that the first and third days post-op are the worst because it’s a deep muscle pain that you’re experiencing, in addition to the two surface incisions, and bruising begins to set in over the first three days. (The second incision is where they insert the electrical leads which they feed through and plug into the battery pack.)
Full recovery takes 4-6 weeks, and you may as well err on the side of caution.
For some reason, leading up to the permanent implant surgery, I thought that I would be limited in my activity for 2-3 weeks. I thought after this time I’d be able to return to my weekly chiropractic visits, workouts with my trainer, and, after 3 weeks, get back into the pool for water aerobics.
It was during pre-op formalities that I discovered I would need 4-6 weeks to recover and resume normal activity levels. I am not allowed to bend, twist, reach, do any heavy lifting, or do any workouts outside of walking on a treadmill, for 6 weeks. That’s because your body needs time to grow scar tissue over the leads, so hold them in place as securely as possible.
That means that my boyfriend is still helping me with things like putting on socks and shoes, and if I drop something, I just have to leave it there until such time as he can come and pick it up for me.
My results
It is 1000% worth the hassle and pain for me to have gotten this implant. During the trial, I experienced about an 80% decrease in pain symptoms. I had a couple of days where nerve pain was able to break through and I felt it, the pain got up to about a 7, but I increased the level of stimulation in the implant and was able to minimize the pain enough to rest and not be in agony.
I am 10 days post-op from the permanent implant and have had 2.5 days where I felt nerve pain break through and it got up to about an 8 or 9. Both of these days were days when I had to sit upright a lot to charge my unit.
Charging your unit for 45 minutes or so per day will save you a lot of headache and hassle.
If you allow the unit to get to low charge, it will take 4-6 hours to charge completely!
I haven’t had as much relief for the pain in my left buttocks during the permanent implant as I did during the trial. However, I am going back to Dr. Unicorn’s office tomorrow afternoon to work with my Boston Scientific clinical technicians to set up additional programs and try to target that pain area more effectively.
It is with great joy and excitement that I report, however, that yesterday I was able to go to five different stores to casually shop with my boyfriend, and get in and out of my car three times, and return home with no nerve pain in my leg at all. In fact, the soreness I felt was mostly in the muscles in my thoracic space.
That, my friends, feels like a blessed miracle!
We will know more about the level of pain relief in the long-term, of course, when I am able to return to pre-surgical normal activity levels and my therapeutic workouts.
In speaking to my older sister this afternoon we had the revelation that, while I probably need to avoid seeing her and the kids (both under the age of 4) for the next several weeks and that sucks, once I am through my full recovery I should be able to be more like “Normal” Aunt Kelly again. What a gift that would be.