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.