to relieve my pelvic pain after yet another pelvic surgery (the fifth to be exact). The latest ordeal involved a Pelvic Pain Specialist removing a fallopian tube embedded in scar tissue between my pelvic wall and colon – three years after a full hysterectomy. (How does that even happen?)
Not long after the mass was removed, I started having severe nerve pain in my groin, hip and lower back. Pain that traveled to my toes and vibrated like a live wire. My hips were at a permanent angle, and I was limping around like I had sprained something. It was embarrassing.
Over a year I tried:
- Three attempts at physical therapy
- Pelvic therapy
- Medication (nerve and pain)
- Chiropractic work
- Massage therapy
- A pain psychologist
- Steroid injections
- Nerve blocks
- A nerve specialist (who confirmed damaged nerves)
I was done. I had given up. I figured I was just going to live like this. That’s when I landed at the KU Medical Spine Center.
And when Dr. Dawood Sayed mentioned DRG (Dorsal Root Ganglion) Therapy – a new type of spinal cord surgery, I balked at the idea. But after two more weeks had passed and I was missing work again because of the pain, I pushed my way back into his office and he explained in more detail how the device works.
Already common in Europe, the DRG Therapy is new in the U.S. – so new that I later find out I’m among the first 20 in the states to have the device.
From the St. Jude Medical site: “By stimulating the DRG, a spinal structure densely populated with sensory nerves that transmit information to the brain via the spinal cord, the St. Jude Medical Axium system delivers a form of spinal stimulation that gives physicians the ability to treat the specific areas of the body where pain occurs. As a result, DRG stimulation is a first-of-its-kind therapeutic approach that provides pain relief to patients with neuropathic conditions underserved by traditional SCS who have tried multiple treatment options without receiving adequate pain relief.”
Sounds a bit invasive, yes?
But the game-changer is the fact that you can test this device out before having it implanted surgically. You wear everything that would go in surgically on the outside for five days and decide if it’s worth it to have the surgery.
And that’s exactly what I did. I was rolling the dice, but I had the choice to opt-out if it didn’t work.
On the third day of the trial, after procedure pain had finally subsided, I had my rep adjust the device to see if I could get more relief. (Yes, you get your own rep to contact throughout in case you have a question or an issue!)
I stood in the waiting room of the doctor’s office with Herb Adee while he made adjustments on a remote to my device.
I was feeling torn now about whether or not it would work for me. I had gotten about 30% pain relief, but was still having a good deal of pain in my hip.
“OK, try it now,” Herb instructed. I gently kicked my leg forward and back to see if there was a difference. And just like that,
the pain was gone.
My eyes welled up, and I hugged Hank fiercely. I couldn’t believe it.
The one thing about transitioning from the trial to the actual surgery is there’s a waiting period. Since this is a new procedure to the US there is plenty of paperwork and insurance mumbo jumbo to deal with. And during that time you’ve had a “taste” of the pain relief, but now it’s back. But soon enough, the surgery was complete and I was home recovering.
There was some pretty gnarly bruising and pain. A tiny pessimist in me nagged a bit with things like, “What if doesn’t work after all?” and “What if the battery is in a bad spot?”
But it wasn’t the case at all. I have my own remote and can adjust things as needed. And, my hips have slowly gone back to their normal resting place, I can walk quickly with no pain, and I can even sleep on my stomach again. And, I’ll be blunt here, for the first time in a over a year sexual activity doesn’t hurt. It’s like I found the pot of gold at the end of the pelvic rainbow – and it’s real.
In short, I have my life back – and when asked how much pain relief I’ve gotten by Dr. Sayed, I was able to say 90%. NINETY PERCENT!
I thanked him profusely. He gave me an option when I thought I head hit a dead end. (It also helps that I happen to have an extremely patient fiancee).
And so yes, for the record, I highly recommend considering this new technology. You can even have the device removed if over time you no longer need to turn it on. The ability to be in control of the device is phenomenal. I hope it can change your life, too.
Random tips for DRG Therapy patients:
- Don’t try to lean or twist during the trial or recovery. It’s not worth it. One day during the trial I quickly turned in the kitchen and caught my battery cord on a drawer pull, effectively pulling the lead about a half inch. Not cool.
- Sleeping during the trial is a bit tricky as you have to find a comfortable spot and it may be difficult.
- Be prepared for sponge baths!
- Don’t let your bandage get wet or sweaty.
- Be sure to test out a fake battery (they will give you one) by taping it in different areas on your lower back.
- In regards to the airport: they will give you a card to show when you go through the scanner.
- Keep you remote and charger on you!
Lastly, if you have any questions, please feel free to reach out to me below!