Getting Turned On

Oh yes, it happened…my Spinal Cord Stimulator was turned on today! It may take a couple days to really start feeling pain relief.

Oh, something I forgot to mention in my previous post…yes, the battery can be seen and felt through the skin. I don’t mind though.

This is how the rep turned on the device and paired it to my controller. It’s a giant magnet. Cool, right?!

This is my controller. That’s right, all mine and no one else’s ( I’m looking at you, Hubby).😜

The device cycles on for 30 seconds, and then off for 6 minutes. The program may need to be adjusted, but time will tell as I continue to heal.


With love,

J♡

I’ve Been Avoiding You

Hi, everyone! I hope that life has been treating you all well lately.

I’ve been avoiding posting since surgery. My body is used to Hydrocodone, but the Oxycodone they prescribe after surgery packs more of a punch. It knocks me on my butt and makes me pretty dopey. I’m trying to type this before my pill kicks in and I no longer make sense. Perhaps it’s best to have the hubby proofread before publishing.

I was told that surgery went smoothly, just a little bit of scar tissue to work around while placing the leads. I was home by early evening and enjoying a delicious sandwich. The first day home, I actually wasn’t feeling too bad. I think that was thanks to the pain meds from the surgery center still galloping through my veins.

The following days were much more painful. It hurt to do anything. Now that I’m a week and two days out, the pain is letting up; not enough to be off the pain killers just yet or drive, though.

I had my post op visit with the physician assistant yesterday and she said the incisions looked like they were healing well. That appointment wasn’t all rainbows and sprinkles though. I’ve been having my psychogenic movement attacks (I’ve mentioned these briefly before) this week, and during my appointment, I had a big attack. My body tensed up and jerked so hard that I was in tears. My legs gave out and I nearly fell, catching myself on the chair. I felt so embarrassed. My husband and the PA both assured me I shouldn’t be embarrassed, and my hubby tried his best to get me to focus, calm my breathing, and relax. I guess in a way, these are like major panic attacks. Whatever they are, they leave me feeling drained afterwards.

I get my device turned on tomorrow, and will do my best to post so you all can see what I’m talking about. For now, here’s a few little tidbits:

  • There are two incisions – one on the thoracic spine, where they did a laminectomy to attach the leads. The other is in the upper portion of my left butt cheek, where the battery now lives.
  • Both incisions are about 2 inches long.
  • I need to be careful about bending and twisting, and should not lift anything over 10 pounds.
  • My emotions are scattered all over the place, but I definitely do NOT regret doing this.
  • I’m looking forward to being healed up and feeling more human.

Until tomorrow, my friends. Thanks for all your support.

With love,

J♡

More Robot, More Human

Hi friends! How are you?!

As many of you know, I went through the SCS (spinal cord stimulator) trial recently. I have to tell you that overall it was a success! Here is how the week long trial went…

The day of the procedure if I’m being honest, was brutal. I was sore from where the leads were inserted, and it wasn’t particularly comfortable to lean back with the battery pack taped to me. The other problem was that I was in a ton of pain in my mid back. It wasn’t from the procedure or device however; I believe I pulled a muscle in the shower that morning. Don’t ask me how…I really don’t know…just that talented I suppose.

The day after the trial was amazing! The severe pain in my left leg was gone. My low back, down to my toes felt so much better. I woke up and moved about the house without waddling and wincing. I was able to lift my knees toward my chest without pain. I was able to lie flat on my belly without excruciating pain. I even stood for long periods of time without needing a pain killer. When my family checked in on me to ask how I was, I responded with “I’m good” and for the most part, really meant it. These are some things I hadn’t been able to do in years, and I was loving every moment! I felt so confident that this was the solution I needed, that I called my surgeon’s office to schedule my consultation for the permanent implant. His schedule fills up fast, and I didn’t want to delay things any longer. I will see the surgeon on the 30th of this month. With the last 3 surgeries, he was able to do them within a couple weeks of consultation.

Days three through six were just as great as far as pain relief. With minimal activity, I was getting 80-90% pain relief, and with more activity, 60-79%. To give you a better understanding of how awesome those numbers seem to me, a trial is considered successful if a patient receives 50% pain relief. What drove me crazy was the desire to take a real shower and to get that dang medical tape off my back. Otherwise, I really didn’t have any complaints.

The day the trial leads were removed, I felt happy to get the battery and tape off my back. I was also a little sad because I knew the pain would be coming back soon.

The red dots near the spine, are where the leads exited. The redness on the left side is from the bandages that held the battery in place. I seem to have a sensitivity/allergy to the adhesive/glue.
These are the leads that were removed. I will spare you the picture of them dangling out of my back. The removal was uncomfortable because they gave a little resistance, but it wasn’t necessarily painful.

The device rep said I may continue to feel pain relief for a day. Sadly, by that night my low back began to ache, and by the next day I was hurting more. I am now back to the usual 8-10/10 on the pain scale. I am holding on to the hope of permanent pain relief being right around the corner. I just need to hang in there a little longer. I know that getting the permanent implant will make me a little more of a robot (with the hardware that’s already in place), but honestly, when the trial was in place, I felt more human than I have in a long time. Maybe you all can start calling me roboJ2019 😆.

As always, I appreciate all of your positive vibes, well-wishes, and prayers! Thank you for your love and support.

With love,

J♡

Now Taking Appointments (Procedure Day)

Do you have fuzzy television reception? Are your radio stations not coming in crystal clear? Book now! Just place J♡ next to your electronic device and receive the reception you deserve! All for the low, low price of “just kidding”!

Today was procedure day and although it was not mentioned, I am curious if the wire leads in my back will improve reception and/or WiFi signal. To the best of my knowledge, the procedure went smoothly. I had the IV placed in my hand and was sent back to the waiting room until the device rep arrived. Once he did, I was brought back in to discuss what type of pain relief we were looking to achieve and what to expect over the next week. I’m not allowed to shower; only sponge bathe the essentials. It’s 111 degrees here…I really didn’t think this through. The rep told me that once the leads were placed, they would wake me up a bit so he could ask if the signals were reaching where they were needed. He told me I probably wouldn’t remember that part. He was right.

In the procedure room, they had me climb up on the table and onto my belly. They said because I’m tiny, they had to pile pillows for me lie on. Two people squishing down these pillows so I could climb up…I found this rather amusing. I was told when the medication would go into my IV to relax me. I was worried they might stick me before I fell asleep, so I kept tapping my fingers to the music so they would know I was still awake. I felt more medicine run through my veins and felt very warm. Next thing I know, I’m climbing off the table and into a wheelchair. It felt like everything only took a few seconds, but I guess the procedure actually took about 30 minutes. The device rep talked to me once again and gave me the controller for my device. They gave me a juice pouch, removed my IV, and sent me on my merry way.

The last couple of days, my left leg had been in so much pain I could not get comfortable. I’m happy to report that it does feel much better already. My back on the other hand, hurts something awful. I was told I would be sore for the first few days probably. The device rep will check in with me by phone several times this week. Those will be the only times I should use my controller if necessary.

The lumpy looking spot on the left is the external battery.
Ooooh my very own controller.

Well I’m a bit tuckered out and a nap sounds pretty good right now. I will try my best to update with how things are going day to day. Thanks for all the love and support!

With love,

J♡

I Had a Bad Day 😣

Today (technically yesterday, now) was a bad one. As the whole family has been keeping some late Summer nights, it started like most days…waking up close to 11am, except today started with another massive headache. The kind where you don’t want to move, be in the light, hear noise, talk, or even chew your food. It was like a nightmare of a hangover, but without the party story to tell. My mom stopped over and brought us all lunch. I hardly touched it and took a couple of Tylenol. Fibro and back pain also thought it was time to play. Sharp pains through random body parts, skin that felt bruised to the touch, back pain pain that wrapped around the front like labor pains.

Just minutes after my mom left, the fun really kicked in. I walked into the laundry room and suddenly a wave of doom washed over me. I felt like a horrible memory had been triggered, but no idea what that memory was. I slumped down, back against the washer and told the kids to see if Nanna had drove away yet (she’s very familiar with panic attacks) or to get their dad. I wanted to cry. My body felt like it was being heated from the inside, out. I felt like I had a fire and tingling inside my head. The sense of doom passed quickly, but it was a scary feeling.

The kids allowed me some time to nap, which helped with the pain, but I still wasn’t feeling quite right. As I went into the laundry room, the same sense of panic set in. It felt just like the first time. Maybe this one was triggered by the recollection of the first one. Once again, the sense of doom passed quickly, but the tingling fire feeling stuck around for hours. Even as I type this, my head doesn’t feel right. I text my mom and she offered to come back over since my husband had to work. I declined because I knew she was busy, but then she said she was heading over. I’m glad she insisted. She was also sweet enough to go pick up my antidepressant.

I believe that little pill is responsible for much of today’s excitement. Ok, actually I’m responsible – er, irresponsible. I ran out of my little happy pills a couple of days ago and kept forgetting to pick up the refill. I do okay if I miss one night, but two or more throws off my groove. I guess this time, my groove went far away. I took my pill tonight, but I know it might take a couple days to get my system right. I will not make this mistake again. Today has been hell, but tomorrow will be better – hopefully.

Thanks for reading. I will try to make tomorrow’s post a little more happy. Take care, friends.

With love,

J♡