My Recovery Tips

Here is a list of things I found helpful after my ONS implantation. I had an alternate lead placement, so some items might not apply to your situation. I will add more as they come to me.

Ice Packs
These are a necessity. They help with the post-op swelling and are soothing for nerve pain and migraines. I found it was nice to have 4 so I could rotate them and always have a cold one. My favorite are the ones that are made out of fabric because they are less cold to the touch than those made only of plastic. I got the generic cold compresses at Walgreen's. I kept them in a pillow case rolled up to keep my skin from getting too cold.

Ice chest 
I kept an ice chest next to me to keep my ice packs and drinks in. Our freezer is a drawer under the refrigerator, and during recovery you are not supposed to lean over. So, I kept my ice packs in a ziplock, on ice in the ice chest so I had access to them while the boyfriend was at work. It was also nice to have bottles of water in there so I didn't have to get up everytime I needed a drink.

Sleeping area in which you can elevate your head and lots of pillows
The pain from the lead implantation kept me from being able to rest my head on anything during recovery. I slept on the couch so I could keep myself propped up against the arm (with the help of many pillows), but you might be able to accomplish the same thing in bed with pillows or maybe even in a recliner.

Straws
It hurt to tilt my head back to drink during the first couple of weeks, so I appreciated having straws.

Pill tracker and reminder 
I used a free app on my phone called Rx Caregiver. It allowed me to enter in the pills I was supposed to take on a schedule and pills I was supposed to take PRN (as needed). For the scheduled drugs, it sent me reminders. As I took PRN drugs, I just entered them into the app. That way if I lost track of what I had taken, I could view the drugs I had taken on my phone. A pen and paper would work just as well.

Timer 

I used an app on my phone to set a timer each time I took my pain meds. I found that if I took a dose too late and was in pain, it was much harder to get the pain under control than if I took them every 4 hours like I was supposed to.

DVDs
I recommend having a lot of mindless entertainment on hand, especially for the first week or so. I have Netflix and friends lent me some DVDs, so I was well-stocked.

Grabber
Because you are not supposed to lean over during post-op, it's nice to have one of these on hand to pick stuff up off the floor. I got mine at Walgreen's.

Cervical collar
Your doctor may order you to wear one. If not, you might consider picking one up at a medical supply store. They're inexpensive and I found my invaluable. For the first few weeks the swelling made the wires very tight, and if I didn't hold my head up right they pulled on the leads. Ouch! This also happened when I turned my head side-to-side. The collar helped me hold me head up in the proper position and reminded me not to turn my head to look at something but to turn my body.

Nightgowns
My battery pack was placed above my hip on my low back. Waistbands were painful because they put pressure on that area. I found nightgowns were the most comfortable thing to wear. I then progressed to my boyfriend's boxers because they had a very stretchy elastic waist. Elastic waists will be your friend if you have a similar battery placement.

Soft foods

I found it very difficult to chew during my recovery because of the placement of my left lead. When I chewed, the muscles moved under the lead and caused quite a bit of pain. I lived on mashed potatoes, creamy soups, smoothies, oatmeal, applesauce, yogurt, baby food, purees, and macaroni and cheese. There are lots of websites out there with recipes and lists of soft foods if you have to follow this diet, too.

Relaxation tools 

I burn lavender oil when I have a really bad headache. It helps to relax me because I get very tense when in pain. Do whatever helps you to relax - music, guided meditations (there are plenty of free podcasts for these), aromatherapy, deep breathing, etc.

Ask for help!
I'm a prideful person, so I hate asking for help. Surgery is a humbling experience that taught me how much support I had around me I wasn't utilizing. People were so helpful and giving and made the tough time a little nicer. That leads me to my next tip; the online care calendar.

Online care calendar 
There are several of these free sites to use, but I liked Lotsa Helping Hands. This calendar enables you to set up the days you would like help from others with meals, rides, visits, house cleaning, etc. Your friends and family can go sign up online to help with these tasks. I liked it for 2 main reasons: 1) people want to help, and this gives them something specific to do and 2) it keeps you from having to keep track of who is coming to visit and when - something that is difficult with a drug-addled brain.

Company 
I typically don't like people to see me laid up in my PJs, but I lost some vanity post-surgery. Spending most of the day by myself staring at the TV became boring quickly, and I loved having people over to chat. There were even days when I was in a lot of pain and felt like I didn't want a visitor, but after the person showed up I found that my pain decreased some after 15 minutes of chatting. There were also days where I was very frustrated with the stimulator's poor coverage and a visit with friends really cheered me up. So, good company can help with both the physical and mental aspects of recovery.

There are a few important caveats. First, only have people over that lift you up. If you have a toxic friend or family member that can exhaust you when you are well, you probably don't want them over while you're recovering. Second, set time limits, explicitly or just keep them in your head. I found I could get worn our pretty quickly - even when just chatting with friends. You don't want to overdo it.

The knowledge that I can say "no"
This was extremely important during my recovery. There were days multiple people wanted to visit, friends wanted to come in town and stay with us, a relative wanted to talk on the phone when I was in a lot of pain, and just my own expectations for myself to write a blog post or do chores around the house overwhelmed me. Your one job during your recovery is to take care of yourself. Period. If you don't care for yourself properly, you can set your recovery back. So, sometimes you have to say "no" to take care of yourself. Most people are usually understanding, but some people don't like to hear "no." I had one friend that wanted to come visit after another friend did, and I had to say no because I knew that would make me too tired. She was upset enough that she never tried to visit again during my entire recovery. I was frustrated that she took it so personally, but knew that ultimately I had done the right thing.


*Graphic courtesy of the blog Hyperbole and a Half

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 Four Post-Op

The Convalescent Willard Leroy Metcalf

Week 4 was a bit of a roller coaster. I started out by getting worse but luckily ended the week feeling better. I think I overdid it activity-wise at the beginning of the week and paid for it. The swelling around the leads got worse and the pain increased. So I had to backtrack and rest a lot more to allow myself to heal. I was still on the couch 24/7 all during the week save a few trips to the massage table each day.

The dermabond came off of the incisions on my mid-back and neck. I ended up peeling off the dermabond over the battery pack incision. I was very happy with the appearance of the scar and all the bruising (and almost all the swelling) was gone. It was still tender if I pressed right on it.

The headaches were rough all week. I kept the stimulator on 24/7, but I was still unhappy with the coverage I was getting (especially with the left AT nerve lead).

By the end of the week, the swelling had subsided some. I also recovered enough energy to leave the house to have frozen yogurt. It felt so great to get out for a little while and rejoin the real world.

Just a reminder to those of you out there considering the surgery. I was disabled before I got these headaches from chronic Epstein-Barr and fibromyalgia. As such, my healing time will take about twice as long as the "normal" person because it causes these conditions to flare. Also, I got the stimulator not just for headaches but for nerve pain in my head. So, the sensitivity I feel in my head post-surgery might also be more pronounced than someone without cranial neuralgias.

Using My Neurostimulator

Here is a picture of the remote (or programmer) I use to control my stimulator. The paddle (or antenna) is placed over the battery pack (on the right side of my low back just above my buttocks) and I operate it with my right hand. I tuck the paddle into the waist band of my pants. With the programmer I can turn the stimulator on and off, select or change the program, increase or decrease the amplitude of the stimulation, change the balance of stimulation between the right and left leads within a program, and check the battery capacity. Here is a picture.

Below is a picture of my charging system. The box is a wireless charging system that I can plug in. When it is fully charged, it holds enough juice to charge the battery 2 1/2 times. The paddle with the wire is known as the charger antenna. I plug it into the charging system and place the paddle over my battery pack. I can charge it as much as I want, but currently I do it once a week. I usually have a little less than a 1/3 of the battery power left after a week and it takes about an hour to recharge it fully. I do it while I watch True Blood on Sundays, so it seems like less of a chore. 

Week Three Post-Op

Picture courtesy of the very talented
Deborah Leigh via Flickr.

Week 3 started out pretty well because I got another reprogramming that extended my coverage. I've had a different rep for each programming, and this one did the best job. The coverage was still insufficient - mainly because my jaw was still spasming when the lead for the left AT nerve was turned on, so I couldn't turn it up high enough to get to my painful areas. The lead over the left and right occipital nerves was getting better coverage, but I couldn't turn it up very high because the incision site was sore. I think the coverage will improve once I can turn up the amplitude. The bump under the tip of that lead decreased, which was a good sign. All of my swelling reduced some, especially the swelling over the battery pack. The bruising over it was almost completely gone by the end of the week and I only occasionally needed to use ice packs over it. I still used ice packs on my leads when the pain got really bad, but I tried not to because any pressure on them caused discomfort.

I was still having headaches regularly, so I kept the stim on constantly. The improved coverage helped with the pain, but I still had to take pain meds around the clock (although I was taking less than in the first 2 weeks). At this point, my headaches post-surgery were worse than pre-surgery, but that was to be expected. I have neuralgia (nerve pain) as well as headaches, so the trauma to the head from the surgery really irritated the nerves.  Since I can't turn the stim up very high, it isn't able to counteract that increased pain yet. 

The dermabond over the incisions on my head started to come off. I think the oil in my hair made them loosen up before the ones on my neck and back did. The incisions are completely closed, but still sore with palpation.

I was able to lie on my right side briefly (which is where my battery pack is). My head got sore before my side did - which was after a few minutes. Whenever I tried to move my head without my cervical collar on or rest my head on a pillow, the pressure on the leads was painful. So I was still sleeping sitting up on the couch with the cervical collar on. Being in this position 24/7 caused a lot of neck pain and inevitably headaches, so I was pretty frustrated. I tried to get up often just to stand or walk around and take breaks on the massage table. 

I was still very fatigued, which was to be expected with the surgery and my chronic illnesses. But I found that visits from friends were energizing and I was even able to read a little due to decreased pain medicine use. 

Week Two Post-Op

At the beginning of week 2, I had my first post-op appointment. A St. Jude rep met me at the doctor to reprogram the stimulator (a different rep from the one who programmed me in the hospital after surgery) and a nurse examined my incisions.

The St. Jude rep was able to explain why it was so painful to turn the stimulator on. There are 8 contact points on each lead, and with each program you can specify which contact points get stimulation. The programs I was set up with in the hospital only used one contact point on each lead - which was the equivalent of someone just poking me hard in one spot on my head according to the rep. I was pretty irritated with that information because it didn't make sense. My head was already very sensitive from the surgery, so this type of stimulation was just downright painful.

The rep gave me 4 more programs to use. One issue we kept running into when programming the left lead (over my AT nerve) was that the contact points at the top of the lead cause my jaw to spasm when turned on. This irritates the trigeminal nerve and causes quite a bit of pain. Unfortunately, it's these contact points that enable the stimulation to cover my most sensitive area - my temple in front of the ear. As I continue to heal, it's slightly possible that this will stop happening. The trauma from the surgery causes fluid build up around the leads. Fluid is a conductor, so the stimulation you feel after surgery is more intense.

The rep also showed me how to charge the battery and advised that I charge it fully at least once a week.  I can charge it all at once or in several small increments of time. The first time I charged I had about a 1/3 of the battery power left, and it took me 50 minutes to fully charge it.  

The nurse that examined my incisions said everything was healing well. When I asked about the bump that formed under the top part of the right lead, she was encouraged that I had noticed some reduction in size throughout the first week. She told me to continue monitoring it and that they would check it again in 4 weeks. When I inquired about the tightness of the wires, which by that point had become very uncomfortable, she attributed it to swelling and asked if I had been wearing my cervical collar. I was nonplussed by this question. When I told her that I didn't know what she was talking about, she informed me that the hospital was supposed to give me a cervical collar when I left and that I was supposed to be wearing it during my recovery. After doing some digging of my own, it turns out my doctor never put in a request for the collar, so the hospital didn't give me one. I was incensed by this oversight and when I tried to contact the hospital to pick one up, they didn't know what to give me and couldn't get my doctor on the phone. Luckily, a friend of mine had one and let me borrow it.

Once I put it on, my neck pain immediately reduced and I no longer had the tugging pain on the leads. Because I've had several years of a mostly "bed rest" life, my neck muscles are very weak. After the surgery, I was sitting upright 24/7 trying to support my head. I have a natural forward head posture, and this posture put strain on the wires which in turn tugged on the leads, further irritating the discomfort there. So the cervical collar gave my neck muscles a much needed break and allowed me to hold my head in the correct position.

This is pretty much what I looked like sitting on 

the couch in my PJs with my cervical collar on. ;)

Even with the cervical collar and reprogramming, I still had a rough week with terrible headaches most of the time. I kept the stimulator on all the time and even though the stimulation was pleasant, it still didn't seem to be helping enough because I wasn't getting sufficient coverage. The doctor and St. Jude reps all stress that as I heal, I will start feeling better coverage because I'll be able to turn the unit up higher and they'll be able to program the stim better.

During week 2 I also had to start a mostly liquid diet. The left lead that covers the AT nerve is on the side of my head, just above my ear. That whole area was super sensitive, and when I chewed it irritated it more and caused headaches. So, from that moment on until today as I write this (almost 4 weeks post-op), I've been living on smoothies, creamy soups, and pureed foods. Here is my favorite smoothie recipe. It helps me get sufficient protein on this restricted diet.

Like in week one, I spent the whole time on the couch watching movies or on the massage table. Friends continued to visit bringing meals, which always helped take my mind off the pain. I still took my pain meds around the clock and used ice packs religiously.