Spinal Cord Stimulator - The Real Deal

Last Friday I had a permanent spinal cord stimulator (SCS) implanted. That was much sooner than I expected. I only got the trial lead out last Monday. But when a cancellation occurred and a slot opened up, I took it.

However, the time slot was not for Dr. Chris; it was for Dr. Willy. That made me a little nervous, but I had met him and like him. Picture a polite, African gentleman with good posture and elegant hands. Now I want to switch from Dr. Chris to Dr. Willy permanently.

The surgery was insane. Absolutely insane.

First they gave me a bunch of local anesthesia in my back. Then they tried to give me twilight sedation, but I did not react well. I started sobbing! That did not work well, because I needed to hold still, and the sobs were shaking my body. Dr. Hayden, the sweet anesthesiology fellow doing my anesthesia for the procedure, leaned in to ask what was wrong. Was I scared? Nervous? I just said, "I don't know, I don't know." I was a little nervous, but that was not why I was sobbing. Dr. Hayden gave me something to cancel out whatever he had given me, and I stopped crying. That was good, but they still had to cut me open.

I heard Dr. Willy talking to Dr. Amos, the pain fellow doing the procedure (he also did my trial procedure). He was saying where the incision should start. Incision? Now? Oh, boy.

At first I did not feel it, and then they hit a spot that was not numb. AGHHH!! I cried out in pain. They gave me more local. Dr. Willy commented to someone (Dr. Hayden?), "It is going to be hard to dissect down with her awake." That was when I realized that they were making the 4-inch incision they had described to me, in the middle of my back, all the way down to my spine. They continued to give me local anesthetic when I cried out, but I felt a good bit of the "dissection."

It was so painful. Dr. Hayden gently uncurled my unconsciously balled-up fist and gave me his thumb to squeeze. He said I was doing great.

Once the leads were in, it was similar to the trial procedure. Moving them around to find the right spot. Me giving detailed descriptions of where I felt the stimulation. Vaughn from the implant company would adjust settings ("I'm putting 1 as cathode and 6 anode..."), and I would give more feedback. When they moved the leads and hit nerves, I was sometimes stabbed with intense pain. Dr. Amos tried to avoid that.

About an hour in, I realized that I needed to pee. Badly. I had gone right before I went into surgery, but whatever, nature was calling. Finally I spoke up, and Dr. Willy quickly and kindly said, "Just go. Go right where you are. We will take care of it." I thought that I would hold it as long as I could, and I would let it out if I had to.

It took a long time to place the leads. Apparently my body is weird. Most people have the nerves that go to the front of their body running down the back of their spine (opposite of what you would think). Mine are the other way around. So they had trouble getting coverage of the fronts of my thighs, which is where I need it most. Dr. Willy almost called it quits. Finally we got it! When I said, "Good job, Vaughn, you got my right anterior thigh!" Dr. Willy said, "There is a God!" I said, "I don't know about you, but I was praying." He said, "Oh yes, I was, too--I thought you could hear me."

Through the 3+ hours of surgery that I was awake (not exaggerating), Dr. Amos was so calm and patient. Dr. Willy was also great. And Vaughn, who was a great listener. But Dr. Hayden was the best. He was so supportive. He was up near my head, and I was draped, so he was the only person I could see. After hours of trying to place the wires, after being jolted with pain so many times, I was physically and emotionally stressed. Dr. Hayden leaned in and whispered, "You are incredible!" His kindness was touching, and I felt comforted.

When we had settled on good spots for the wires (I had two leads placed), it was time to suture them in place, tunnel the wires under my skin to my butt/hip, place a neurostimulator (like a pacemaker) in my butt/hip, and connect the wires to the neurostimulator. When I heard one of the doctors ask for the suture materials, I was thinking Hello, isn't it time for me to take a nap now? I knew that the plan was to put me to sleep for that part. Luckily Dr. Hayden spoke up before I had to. He asked, "Can I put her out now?" Dr. Willy said, "Oh yes, please put her out."

Dr. Hayden patted my hand, and it was time to go to sleep. I welcomed it!

I woke up in the OR, after everything was finished. There was no room in the PACU inn, so I had to hang out in the OR for a while.

Right away, I had to pee. The surgery had been nearly five hours, and I ended up being able to hold it. I had expected to wake up wet, having gone while I was unconscious. Surprise, nope! It took a few minutes, several pleas from me, and a request from my BFF Dr. Hayden, and then a nurse brought me a bedpan.

But I could not go! Darn anesthesia. It took a good five minutes to go, but then I filled up the bedpan. Ahhhhh.... After that, I did not mind waiting.

Pain control was an issue in the PACU, as was itching control. It looks like I am allergic to one of the dressings. I have issues with adhesives, so it is probably that. Unfortunately, none of the dressings can be removed for two weeks. They kept loading me up with IV Benadryl, which helped some. I have been taking Benadryl fairly regularly since then.

I hated the side effects of the IV fentanyl they gave me in the PACU, but it did help with the pain. Not for long--they kept having to give me more. I had been warned that the pain from the "pocket" in my butt would be excruciating, and they were not exaggerating. But the fentanyl caused extreme dizziness. The nurse told me to close my eyes, which helped.

Vaughn came into the PACU to program my remote. That took a good 45 minutes. It was similar to the tests in the OR, with me telling him where I felt the stimulation and how strongly. He gave me the remote with an "antenna" that I place over the neurostimulator (under my skin). I have a remote-controlled butt! He also gave me the charging belt, but I am not supposed to use it these first two weeks, unless I absolutely have to. It could increase inflammation that disrupts healing.

So now it has been three days since the surgery. I have slept a lot! Between Benadryl, Percocet, and the energy it takes to heal, I have been wiped out. Today I have only taken one nap so far, but I may need another one. On Saturday I think I took four long naps. I felt like a newborn baby!

I went to church on Sunday, but I had to wear a hat. No showers allowed, and I could not even sponge-bathe until Sunday night. Now I can sponge-bathe. On Friday I can take a shower, as long as the dressing cover is firmly in place--no getting the incisions wet. This morning, my friend helped me wash my hair, which was awesome. My hair was nasty, having not been washed since Thursday!

Gosh, my butt incision hurts. I have to be so careful how I move. And nothing can touch it, even lightly. I guess I could take another Percocet, but I like being awake. I am staying home from work tomorrow and probably Wednesday. They have been great about saying to take as much time as I need. They do not know what the surgery was, because I want to keep my disease private. I do not like everyone knowing my business, and I do not want to risk discrimination. There are a lot of wrong notions about MS.

Oh, goodness, I am getting really tired. I guess I will wrap this up.

I am happy that I have my SCS. The surgery was rough, to put it mildly, but I think it was worth it. I am looking forward to continued refinements of the programming, to cover my pain better. I think it will improve my quality of life.