Weeks 8-11 Post-Op

Sorry I've been MIA for several weeks. There just hasn't been much going on in my recovery and I've been pretty down about my coverage not improving. I've been reprogrammed twice and the reps still can't get the stimulation to the left AT nerve without involving my jaw.

So what has changed? I am able to sleep in a bed every night but it's still uncomfortable. I'm more active but still tire quickly. I had a few new programs added that partition each lead into two parts so that I'm able to control the balance of stimulation between the back and front of the lead. I'm eating solids again but only sparingly because it still irritates the left lead to chew too much.

Next week is week 12 and the supposed date that I'm totally healed. My lack of coverage leads me to believe that my lead placement just isn't working and will need to be redone. This is disheartening because this surgery was very hard to recover from. I put so much hope into this stimulator because the headaches dictate my life. To not have it work properly is nothing short of devastating. I'm very upset with my doctor because the lead placement I have is not what we discussed and he hasn't been helpful during my recovery period. I plan to dedicate an entire blog post to this later because I've learned a lot about what to look for in a doctor when seeking an ONS. As such, I will be seeking another doctor to take over my care and evaluate whether or not I need an alternate lead placement.

I want to reiterate how much faith I have in the ONS technology. I do believe that nerve stimulation is the path to pain relief for me, I just don't have the proper implantation. Until then, I'm just trying to take this disappointment one day at a time. I can't change what happened, but I can change how I move forward from here.

Week Seven Post-Op

The baby steps of recovery

Week 7 began with a reprogramming to decrease the pulse width of the left lead. The left lead was causing my jaw to spasm, so my doctor suggested decreasing the pulse width to stop this from happening. The hope was that at a decreased pulse width, I could turn the unit up higher increasing the chances of getting coverage to the AT nerve.

The rep was able to get my jaw to stop spasming at low to medium amplitudes on all of my programs, but it still spasmed at high amplitudes. He created a few new programs that moved the coverage a little further forward. The lead was still not stimulating my AT nerve, so my coverage continued to be poor.  The rep told me we could try again soon to see if we can fine tune it even better. 

Other new developments: I slept in my bed on my side 2 nights in a row. This ended in increased head pain so I went back to the couch. While at home resting I didn't need the cervical collar anymore. My energy increased a little and I got to go to a used book store to stock up on my entertainment.

What remained the same: daily headaches and mostly liquid and soft foods diet.

Overall I began to feel bored with constant couch and TV time, which to me was a good development. It meant I was feeling well enough that I wanted to do stuff, but my body just wasn't quite ready. That combined with the other new developments seemed like good progress. Each tiny baby step was thrilling after 7 weeks of slow recovery. I was still battling the frustration and pessimism over the poor stimulator coverage, but realizing that the stimulator can be programmed in more sophisticated ways (e.g. pulse width) gave me hope that eventually I could get the coverage I so desperately wanted.

Weeks Five & Six Post-Op

My recovery feels a bit like Sisyphus's punishment.
Each time I push the boulder up hill, it rolls back down.

I'm combining weeks 5 and 6 because there was relatively no difference in my recovery from week 5 to 6. There were good parts and bad parts to these weeks, but luckily nothing got worse.

First, the good parts. I did get more energy. I was able to leave the house to visit friends and go to a movie. I still couldn't drive, though, so to leave the house I must have a willing chauffeur. I'm lucky to still have friends willing to come by regularly to visit.

The bad part was that the headaches continued without abatement because the stimulator coverage is still poor. I'm still experiencing up to an 8 on the pain scale almost daily. I saw my doctor for the 1st time since the surgery and discussed my frustrations with the poor coverage and with him forgetting to tell me about needing to wear a cervical collar (something his nurse instructed me to do a week post-op).

With respect to the poor coverage, my biggest complaint is that the left lead that covers the AT nerve causes my jaw to spasm, making it impossible to turn the lead up high enough to get the AT nerve stimulated. He said he could instruct the St. Jude rep on how to change the pulse width to keep the mandibular branch of the trigeminal nerve from being activated by the stimulator so that I could get the coverage I needed. I've scheduled reprogramming for this afternoon to change the pulse width of the left lead. I really hope it helps because it is incredibly frustrating to still have daily headaches after going through the big ordeal of surgery.

As for the cervical collar, he claims I didn't need it because there was no danger of dislodging the leads by turning my head and that his nurse was incorrect when she instructed me to do so. Even if there was no danger of dislodging the leads, I benefitted a lot from using the cervical collar because it helped my weak neck muscles support my head which had to be upright at all times due to my inability to rest it on a pillow.

Another thing I learned at my appointment is that it can take 8-12 weeks until my head is healed from the lead implantation. I figured the 4-6 week estimated recovery time was also the estimated time table for healing, but I was wrong.

I was able to lie on my right side several times during the weeks for short periods. I can't rest the left side of my head on a pillow because the left lead is still so sensitive, but I can rest the right side of my head. Unfortunately, the battery pack is on the right side and I can't take much pressure there for long. So, I'm still stuck sleeping on the couch upright or resting face down on the massage table.

My diet is still mostly liquid. I am now able to eat really soft macaroni and cheese which requires little chewing. I'm growing pretty tired of smoothies and am trying to change up my routine a little to get some variety.

My spirits are low at this point because I don't feel like I'm getting any benefit from the stimulator. I was getting at least 30% pain relief during my trial and expected the permanent to at least be working as well. It seems that with each treatment I undertake, I spend a lot of time and energy with high hopes that this will be the one that gets me out of bed and back into my life. Each treatment has failed miserably, though, and sometimes I even come out the other side worse than before I started.

That said, I still refuse to give up on the stimulator. First, I'm only at 6 weeks post-op so who knows what can happen in the next 6? And if the reprogrammings don't work and the lead placement is deemed a failure, I can still try for alternate lead placement later. I believe the technology is sound and that all it takes is finding the right spots to place the leads to obtain good coverage and lasting pain relief.

Week One Post-Op

I'm breaking my recovery experience into blog posts by week.  This first post covers week 1 starting from the night I got home from the hospital.

The first night, I was pretty woozy from the anesthesia. I ate a little chicken noodle soup, took some pain medicine, and got set up on the couch. I stayed on the couch 24/7. I had to sit up when I slept, because lying down was impossible with the pain from the leads. I couldn't take any pressure on my head. The first 4 days went pretty well. I took my pain meds around the clock and the post-surgical pain was well-managed. My back and neck were sore from the tunneling of the wires, and my low back/hip was very sore and swollen. I kept ice packs on these areas regularly throughout each day which seemed to help with the discomfort. I didn't have any headache pain but did feel sore and tight where the incisions were. I didn't use the stimulator much because when I turned it on, I got very intense pain at one spot on each lead. On the end of the right lead, a bump formed underneath that was very sore to the touch. It seemed to be caused by post-op swelling.

I was able to shower and wash my hair after 48 hours, but washing my hair was very difficult. I gently squeezed shampoo into my hair - there was no scrubbing of the scalp. The dermabond used on the incisions kept them completely dry and protected.

By day 5, the numbness in my head had totally worn off and the swelling from the leads really started to hurt. On top of that, I got a headache. I still couldn't stand to have the stimulator on very high at all, but I kept it on as much as I could in hopes it would help the pain. The rep warned me that the stimulator would not help with post-op pain, so I figured I shouldn't worry that it didn't seem to be very effective.

The wires also seemed to tighten up around day 5 (which turned out to be due to the swelling around them). When I moved my head, the wires would pull on the leads. This really hurt, so I tried to stay as still as possible. I started spending a couple of hours a day face down on a massage table each day that a friend let me borrow. It was nice to be able to give my neck a break and to lie down. I usually dozed while on the massage table, a lucky break since I was sleeping so poorly.

I had quite a few visitors during that week. My boyfriend and I started a care calendar through Lotsa Helping Hands. This site is free and enables you to set up a calendar through which your friends and family can sign up to help with meals, visits, rides, errands, cleaning, etc. We were well fed during week 1 - a welcome break to my boyfriend who was taking care of me on his own while working full time. It was also nice for me to have visitors to break up the monotonous hours on the couch. I highly recommend using a site like this because your friends and family want to help, they just don't know what to do. Also it takes the pressure off of you to come up with ideas of how they can help by allowing them to sign up for what they want to do and when.