9 wks post-op

The past 9 weeks have been a whirlwind but I’m so glad I’ve had the opportunity to get my permanent stim and that my Boston Scientific Reps have been so wonderful with reprogramming me and checking in with me to make sure I’m doing well.  This week has been going well.  I have been focusing on other medical issues, including getting some imaging and facing possible surgery on my wrist.  I had my first CT scan post- surgery and no issues as expected.  However, getting the IV for the contrast dye was the hardest part.  And turning my stim off, as i was advised, wasn’t making things easy for the ride home and about 30 minutes after I turned my stimulator back on.

However, I have had a low grade headache since then.  But I think that may be a side effect from the contrast dye.  Hopefully I will have results Monday and the Dr. can decide if I do ultimately need wrist surgery or not.  Going through 2 surgeries in 3 months will definitely be an experience, but not something I haven’t done before.  I have previously had my gallbladder out and an ovary removed within 3 months of each other, and that took more time to recover, but a wrist should be easier.

Back to my stimulator…. The new programs from last week have made a big difference with how even I feel the stimulation.  I also like the new programs which have given me more control over the different leads and areas of stimulation.  A week from Monday, I will see my migraine specialist for the first time since my stimulator surgery and I have had such an improvement.  I can’t wait to see her again and thank her for helping me get to where I am today!

Post-op Check-in

Well today was the big day for my follow up with my neurosurgeon.  He took out my staples from the incision in the back of my head and the top of my neck.  He said everything looks good, but not to get complacent with watching the incisions for signs of infection.  He warned me that some of the deeper infections start to show right around the 2 wk post-op time frame.  The best part is my next follow-up is at my 3 month post-op time (so end of August)!  However, that means my restrictions of bending, lifting, and twisting are still in place until then.

I then worked with my rep from Boston Scientific to reprogram my unit and now have different programs to target my pain.  We managed to find a spot that was stimulating the nerves for my low back, but unfortunately for me to feel the sensation, I also get a bunch of sensation in my abdomen and my quads.  Since you don’t have to actually feel the stim for it to work, we turned it down to a sub-sensory level (so its on, but I don’t feel the tingling).  We also worked on spreading out my stimulation along my occipital leads.  I left with 4 new programs to work with for a while.  Then, if I find that I need to be reprogrammed further or adjustments made, I can email my rep and set up another appointment to change the programs further.  This is especially important right now since I’m still healing from surgery and there is still swelling that needs to go away and scar tissue that needs to form.  Once everything has scarred into place, the programs should be able to stay the same for longer, where as right now, they keep needing to change because the leads haven’t settled into their final place.

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.

No more Stim :(

Well, today was the last day and not even a full one at that.  I had my appointment at 11:45 am and they pulled my wires.  I was expecting for an uncomfortable sensation or even a little discomfort, but I literally felt nothing.  My Dr said “all right, that’s everything” and I turned a little to see both full wires in his hand.  I was totally amazed that I didn’t even feel them move.

One of the reps that has been helping me was there as well and he and I got to talk a bit.  I had kept a written journal for each day which I used to describe how the stim felt, what improvement, or lack of, I was experiencing, and also importantly which programs I was using and liking or disliking.  I made a photocopy of that today, as I thought it might be interesting for them to see the trial from my eyes, and gave it to the rep.  He felt that was very helpful as a lot of patients want to hear about the trials and stuff from another patient’s point of view, which I have no problem sharing mine obviously!

I was happy to be able to tell both my Dr. and the rep that I had been able to treat 2 migraines that had started during the week and abort 3 headaches from becoming migraines.  Now, how do I tell the difference- to me, head pain is officially a migraine when I get the additional symptoms besides the pain.  Like when the nausea, light sensitivity, sound sensitivity, etc start in.  Otherwise, if its just pain in my head, its a simple headache.  Although many, even most, of my simple headaches do turn into migraines within a few hours!  The other nice benefit was after both of my migraines I was able to completely avoid the post-drome phase, or that period after your migraine where your head is sore and you feel very fatigued and even like you are in a fog.  That didn’t happen once during this week.  Overall, I had said I felt the stimulator gave me 70% relief this week and I only put it that low because I didn’t have full coverage of where my migraine sits and I feel that may have been a factor in the stim taking 6-7 hours to get rid of my migraine instead of like 2-3.

When we were discussing my experiences and everything, even my pain dr said that for the perm he is going to recommend either a longer lead or just driving this size lead an inch or so further towards my temple to try to get that last bit of coverage area.  He was very happy it was as successful as it is and will be sending his procedure notes over to the neurosurgeon that I chose to work with.  Even the Boston Scientific rep wanted to know when that appointment was, as they are going to try to have at least 1 of them at that appointment to help smooth the transition of care and also help in the discussion for the final decisions for my perm surgery.  Hopefully as soon as the neurosurgeon’s office gets the procedure notes they will start the paperwork for my insurance approval of the perm.  I’m hoping they aren’t going to wait until my appointment on April 22nd since we already lose a month by that point!  Now that both trials are done and I know how well each segment worked, I can’t wait to get it all put together and I really don’t want anything to slow this down, especially something like paperwork that could easily be started prior to my next visit since I had already spoke with the surgeon once.  I figure I’ll call next week and make sure they got my doctor’s notes and to also reassure myself that they are working on my authorization.  I also know I can stay in touch with my Reps from Boston Scientific to help me keep this ball rolling!

The Big Day…. SCS TRIAL

Well, today was the big day of my Spinal Cord Stimulator Trial.  I was told to be at my local hospital, Holy Name Medical Center, for 10 am, for an 11 am procedure.  My mom came with me as I was getting some sedation and wasn’t allowed to drive home.  We arrived an extra 15 minutes early, but it only helps with all the paperwork that has to be done.  I got my bracelet and got registered, was brought over to the pain management pre/post op area just like I had for all my epidurals.  This time they had me put a gown on, where as previously, I was allowed to keep my clothing on.  The representative from Boston Scientific arrived and started unpacking her stuff.  Then the anesthesiologist arrived and my pain management doctor.

My pain management doctor went over everything and explained that they would give me some sedation, then place the wires where they should go.  After that, they would wake me up and plug the leads into the rep’s computer to see what kind of coverage we had.  From there it would depend on how the first part went.  He also told me, that when I was waking up from the anesthesia, it was natural for patients to reach for the epidural needles and leads so don’t be afraid when u wake up and have people holding your arms down so you can’t reach for the needles and wires.  Once everyone was ready I walked to the procedure room and got on the table and they started hooking me up to the vitals machine and the IV medications.  I was given one dose of sedation which made me groggy, but I was still helping them hook me up to the machines, so when everyone was in position to get started, I got another dose of propofol and out I went.

I woke up a while later and the started asking where I could feel the tingling.  No matter what changes the rep made to the program, they could not get the tingling to occur in my back.  My pain dr reassured me that they would readjust it and get it there.  He started to move the leads and it was rather painful and i couldn’t help but moan.  After a few more adjustments didn’t resolve the issue, the anesthesiologist gave me more sedation so they could manipulate the leads without causing me more pain.

The next thing I knew, I was waking up in the post-op room.  My pain dr had already spoke to my mother and told her things had went well and felt he got the all the coverage he was looking for.  As soon as I was awake enough, the rep from boston scientific began working on fine tuning my stimulation and putting programs on my remote control.  While we were doing that by pain dr. popped his head in to say good bye and he would see me Monday.  Once I was done with the rep, I was offered something to eat and drink, so I had some cranberry juice.  Then the nurse took my IV out and I was given permission to get dressed.  My mom helped me get dressed since there is no bending, twisting, or lifting with the stim in.  The rep gave a good analogy to help you decide if you can do something- you can’t do anything that would untuck or put significant tension on a tucked in shirt.  To move in bed, the best way is to sit on the edge, lay onto your side and then log roll into the position you want to sleep.  Glad I learned how to move like that during PT school!!

Unlike past epidurals, I decided to take the optional wheelchair ride down to the lobby.  My mom ran ahead to get the car.  We then took a nice easy ride to the local kitchenette for a light lunch since it was after 2 and I hadn’t eaten yet.  Then we went home so I could take some of my pain medication and lay down.  It is not 8:20pm and the pain/soreness I’m feeling is really from today’s procedure and not the usual pain and burning that I have from my back injury.  Hopefully over the next 2-3 days the procedure pain will go away and I can tell for sure if this is just procedure pain.

All the wires and two batteries are taped to my back and a pulse generator in an elastic strap that goes around by waist/stomach.  This whole area/taped down section is very tender to pressure so when sitting against anything (especially my couch) I am putting a pillow above the area, behind my shoulder blades, to make me comfortable and decrease the tenderness!  I am more sore and tender than I expected I would be, but nothing I can’t deal with.  However, the representative did talk about using the paddles for the perm, which I know are more painful since a laminectomy has to be done to appropriately place the paddles.  That decision in down the road though and not something I should worry about just yet!!  For now, I’m gonna enjoy the buzz and pain relief it is giving me!! 🙂