Post-op day 12

I had wanted to be posting more than this, but things have just gotten away from me.  I had a few days where my pain flares and I have started getting more intense muscle spasms.  I see my surgeon tomorrow for my follow-up and will ask him about it.  Other than that, I’ve been trying to walk and take less pain meds, which is working.  I’m taking a little over half of what I was taking when I was discharged home.

Three days ago I was woken up by a pounding headache about 7:30 in the morning.  I turned my occipital stim leads on lightly, and rolled over to try to get back to sleep.  I woke up later around 11a and the headache was still pounding in nature, but the pain level wasn’t out of control.  The whole day, my pain didn’t exceed a 5/10 which is typically my borderline of manageable.  There were times where the pain was escalating so I would turn my stim up just a bit to see if it would help and after like 20-30 min, the pain was no longer increasing.  For the first time, I slept with my stim on that night as I still had somewhat of a headache.  I also had some nausea, but taking one of my nausea meds made that disappear.  I would say this was probably my first post-op migraine, and my stim has proven that it may be the game changer I am hoping for.

I plan on returning to the practice of recording my average daily pain scale and if I had migraine symptoms or not that day.  I then will compare it to some of my months prior to surgery and we will see what difference this is truly making for me.  I have also been able to control some of my leg pain with the current programs.  It’s not as helpful as my trial was, but we also didn’t do nearly what we did programming wise, during my trial.  Even the initial programming after my trial was put in was more precise than what we could do initially post-op in the recovery room.  I’m still playing with the programs where we basically just made sure I could feel the stim.  When I follow up wih my surgeon on Tuesday, one of the Boston Scientific reps will meet with me and we will do much more programming to fine tune this and see exactly where we can affect.  The one spot I have on my list to work on finding is my low back.  I have very little to no stim in my low back itself.  I have plenty in my legs, which is where my herniations have caused pain, but I also get some low back pain that I want to be able to cover.  I also want to have more of the contacts on each occipital lead turned on.  It will be interesting to see what we can do.

I honestly can’t wait to see the neurosurgeon again.  I want these damn staples taken out! They are so annoying.  Especially the incision at the base of my neck- that gets irritated every time I put my head back too far.  Plus the incisions have started getting itchy.  Everything looks really good, although my lami incision seems bumpy and a little thick, so I know I have do work on that one to improve how it’s healing.  I still have about half of my lami incision covered in steri strips and the incision made to help get my wires to the battery is still covered, most like because they are protected by my bra during the day, so the steri strip adhesive hasn’t been tugged at as much.  I’m pretty sure if they are still there  when I see the surgeon, he will pull them off so he can see the incisions.

I also know that I need to make a list of questions for my surgeon and make sure I clarify what my restrictions currently are and how long they are in place for.  One thing I have learned talking to others who had this done, is that every surgeon is different.  While many of the restrictions are the same. Each surgeon is unique in when they let patients return to different activities.  The hardest restriction so far has been no bending.  There are so many times that I have dropped something or see something on the floor that needs to be picked up or even simply wanting to pet my dog.  I do have a grabber that I use when things are on the ground, but the reflex to bend over is still there. The no twisting or lifting hasn’t been as difficult, partially since my mom has helped me with a lot of things including my laundry.  The other big task that I’ve had help with is meals- since I still live at home, my parents are doing the cooking.  However, I look forward to when I can cook again and even bake since mixing right now is out of the question.

So far, my body is definitely healing better than I had anticipated and the pain isn’t as bad as I expected.  I honestly feel that has a lot to do with the surgeon who operated on me.  I feel that having such a well trained and knowledgeable surgeon, who was very pro-active with my immune deficiency, has been a huge benefit.  I was honestly prepared for a recovery that would have taken my pain from days 1-2 post-op and had them drag on for 1-2 weeks.  Instead, the pain kept dropping off and improving.  I can even put some pressure on my incisions so I’m sure that once I’m another week or so out from surgery, I will totally be able to tolerate some specific massage to help the incisions heal better.  Right now, if I had to do this all again, I would.  However, I only see battery changes in my future (as my rechargeable battery will last about 4-6 years and then need to be replaced)!!!

Post-Op Day 5

Today was the first day I felt like I took a step backwards.  I am a volunteer EMT in my local town and today was Memorial Day.  I have marched in my town’s Memorial Day parade every year, except for 2, since I was in 2nd grade (which is 20 years)!  I didn’t want to miss the parade due to my surgery, especially since the rest of my family would be going, as we are all involved in some arm of the emergency services.

I got permission to drive the ambulance, instead of marching the route.  I had already been driving and was never told I couldn’t drive, so I felt this was a great idea.  However, what I didn’t think of was that all the waving was going to make my muscles very sore, especially the ones cut during surgery.  I also was off all my pain medication so that I could drive.  Therefore, by the time the parade was over, I was pretty sore.

I came home, took my dose of medication, and took a nap.  I was in and out of sleep for about 2 hrs before I got up.  I have been in the one recliner that is comfortable pretty much since then, except for dinner.  Between icing my back and keeping up with my medication schedule, things are better tonight.

Tomorrow I see my surgeon and believe my staples will be taken out.  Everything seems to be healing up nicely.  All the steri-strips have fallen off my battery incision, but are still intact over my laminectomy site and the other small incision used to track my wires to the battery.  I’ve been talking to others who had the same procedure done for their spinal cord stimulator, so no occipital leads, and I’m still healing at a very fast pace.  I hope this continues and there are no complications, fingers crossed!

At the same appointment that I have with my surgeon, I should be seeing my rep from Boston Scientific.  Hopefully we can play with my programs to improve my coverage.  The only spot I don’t have some stimulation and I did during my trial is in my low back.  However, I do have some in my lower abdominal area and all the way up the back of my legs.  There is still hope as there is a lot of swelling still present in the incision and that will change where I feel the stim and also how strong the stim feels.  I’ve already been sitting in the recliner and just cough and while coughing, the stimulation jumped to a higher level and then went back down to where it was set.  I didn’t have any of these issues with my trial since the leads were put in with the needles and little was done that should upset the epidural space and cause swelling during the trial.  However during the perm, since I had a paddle lead installed, my doctor had to cut away some of the bone on the back of one of my vertebrae so he could slide the paddle in and have the top of it sitting at the top of my T8 (8th thoracic) vertebrae.  I am honestly excited to see what we are able to get as my swelling goes down and we can fine tune the stim more and more.

Post-Op Day 4

Today I am 4 days post-op and that also means done with the IV antibiotics I was put on due to my immune deficiency.  The surgeon felt there was a high enough risk of something getting into one of the 5 incisions and then could follow my wires and leads to my spine, and the infectious disease doctor agreed.  So I have been getting daily IV antibiotic treatments at the hospital since discharge and it was done through the midline put in the day of my first surgery by the PICC team.  Since I am now finished with the antibiotics, they were also able to pull the midline out of my arm.  This is the first milestone of recovery and it feels good to have positive progress.

The surgeon’s PA (physician assistant) had said I could shower yesterday (Saturday, post-op day 3), but since I knew my midline was coming out today I chose to wait until today to shower and change my dressings.  The midline and its dressing couldn’t get wet, so even when I showered the night before surgery #2, I had this special sleeve that the PICC team gave me so that I could shower without my dressings getting wet.  However, it is plastic and got very hot and even though it was only on for 20 minutes, I had sweat enough that I was concerned for the dressing.  So with all that, it just made sense to wait the extra day to shower, so I didn’t have to worry about the dressing and everything.

Showering today/tonight will also be a small milestone along my positive progress towards recovery.  My pain is also improving and I’m starting to space my pain medication more.  I am more sore today- but it’s not that sharp, searing surgical pain.  This is more the aching muscles from being pushed and pulled.  I still get that sharp, searing pain at times- usually getting up and down and if I bend too much or try to push/pull something with too much resistance.  But definitely seeing progress!  I am now starting to look forward to getting the staples taken out this week as the two incisions that are stapled are bothering me more, or I should say the other incisions are feeling better, so I notice the stapled incisions more.  I’ve been told, once the staples are out, they will feel much better- so that’s what I’m hoping for.