A Disappointing Conclusion

I'm getting into the habit of not updating this blog because I have no good news. But really, the purpose was to document my journey with neurostim; not to document only the good times with neurostim. Because truthfully, there haven't really been any good times.

So I'm officially declaring it, I consider the stim a failure. I've yelled, I've cried, I've felt sorry for myself, and I've cried some more. But the truth is, my nerves don't seem to like the stimulation.

I no longer turn the stim on because it makes my pain worse when it gets over a 6 on the pain scale. That happens daily, so it just makes more sense to never have it on. I'm not planning on taking the stim out any time soon, because I want to give my body some rest time. I've been down and out for a year now with these surgeries; unable to function like before. My muscles are atrophying, I'm dependent on a walker, and I'm in more pain than before this all started. I just want to rest. Also, I still have a teeny tiny glimmer of hope that if I give my nerves a year to settle down, maybe they'll be more responsive to stimulation.

What am I doing for the headaches in the meantime? Well, I had to go back to the ER again for a trigeminal migraine that went on for 5 days. Three IV doses of dilaudid & an IV dose of phenergan & Benadryl did nothing, so the ER doc sent me home with a Fioricet prescription (combination of Tylenol, butalbital, & caffeine). After getting the ok from my pain doc, I gave it a shot. On its own, it didn't help. But when taken in concert with my normal breakthrough meds, it finally stopped the migraine in its tracks! So my pain doc agreed to give me a script as long as I don't exceed 2 pills/day. Butalbital is a barbiturate. It's very sedating, but it actually seems to decrease the pain instead of just distracting me from it like opiates.

However, my pain doc is not happy with the turn of events. ER visits and failure of another 2 nerve pain medications are causing them to wave the white flag & insist I see a new neurologist. This irritates me a lot because I've already had a full neuro work-up & was relegated to pain management because there's not much else you can do for occipital neuralgia. I did confront my doctor with my concerns and she said they felt like they've done everything they can do. My internal response is, "Seriously?!" I feel like I keep getting punted back in forth between neuro and pain management. But to show my good faith, I made an appointment with the new neuro later in the month. Really, there's no harm in seeing new doctors because my current ones seem intimidated by the complexity of my pain.

I wish I could say that I'm calm & serene, but truthfully I'm scared and I'm frustrated. I really let myself hope that the stim was going to change my life. I'm not giving up on this fight; I'm just more battered and hesitant than before. I have no idea what is on the horizon, so really I'm just trying not to look ahead too much. I'm trying to focus on the here and now, because that's the only moment I can control. I struggle to stay in gratitude, but when I feel my worst I force myself to tweet a gratitude list. It keeps me from slipping into too much self pity. It's a reminder that even though things seem dark, my life isn't all bad. I have a few fantastic friends, I just celebrated my 9 year anniversary with my boyfriend and amazing caregiver, I have the world's best niece, my cats are healthy, and I have a comfortable bed and central A/C to give me a place to rest and recover. And did I mention I received a gift of the world's coolest socks?

Unicorn and Ninja Socks FTW!

I'm not sure about the future of this blog. I'm feeling pulled to blog more about chronic illness and how I cope with it than just focusing on the stim. My guess is I'll start a new one but still stay in touch here when headache news comes up. I hope I helped someone by documenting my experience, but I do worry that all I did is scare people that the stim is going to fail. So let me be clear: I do not regret getting the neurostimulator implanted. It was something I had to do. The neurostimulator offers drug-free relief from pain. I needed to try it. I just did. I don't regret a single treatment I have tried for that matter. Each time a treatment fails, that just gives me and my team of docs more answers - even when the answer is, "Don't try that again."

Please keep contacting me with questions if you have them. Check out the other occipital nerve stimulator blogs I have listed on my page. Just don't give up hope. We can't stop fighting.

Here I am!

Hello, my lovely followers. I know I've been absent for too long, and I want to start by apologizing. My other conditions have flared immensely during this recovery, and they affect my energy and cognition greatly. But also I just kept wanting to wait until I could type the perfect post, but since it's obvious that might be a while, I decided to just do what I can.

I'm on week 10 of my recovery from my revision surgery and I'm doing better than last time. The stim still isn't controlling my pain effectively, but at least it's not hurting me (well not often, but we'll get to that later). I haven't had much programming because I've been unable to leave the house most weeks, so there's still a lot of room for improvement with that. Mostly I'm positive that more can still be done.

Here are the highlights from the last 10 weeks:

The lead on the left side is working much better than the lead on the right side. The right side seems to have more swelling and often when we turn on certain contact points on the lead, I feel stinging instead of the pleasant tingling and buzzing. Ouch. The hope is that it's still healing and maybe not as primely placed as the left side, so it might just take more programming tweaks and time before I get any pain relief there.

At one point during my recovery, the stim started causing superheadaches that actually involved my Trigeminal nerve, too. Luckily that has mostly passed but for a while there I was determined to cut my head off.

My pain doctor started me on Topomax, an anticonvulsant, to help with my Trigeminal nerve pain in place of the gabapentin. I had a serious reaction/side effect to the drug and my entire skin felt prickly and itchy for weeks. It was miserable because the stupid drug actually worked and I could chew food without pain! But I also had to take several cold oatmeal baths a day and stay doped up on Benadryl to keep me from going mad so we dumped it after 4 weeks.

This recovery has been harder emotionally than I expected. Being unable to leave the house and flaring constantly has been rough. Any time my health changes for the worse I have to get used to a new normal. My new normal is that if I stand for more than 2 minutes my hands begin to shake, I get dizzy, and become parched as if I just ran a few miles instead of brushing my teeth. I'm using a rollator walker to get around often and depend on my boyfriend more than ever. That's not been an easy adjustment for me. I value my independence so much and chronic illness takes a lot away from us. I didn't realize how much I relied on the little I had left, and to watch it be chipped away from me even more over the last year since I started this string of surgeries has been heartbreaking.

I know it might not be forever, and I'm working very hard on getting to a place of acceptance with it. Unfortunately before you get there, you usually have to grieve first. And I've been grieving. I'm reaching out to my online support community of chronically ill people and my friends and family. I make sure I laugh a lot and try to stay in gratitude. Some days I'm just angry and I cry. I let myself feel that and then try to move on. There's no set path for us in dealing with the loss we experience through our illnesses, so I just do the best I can each day. I'd be interested to hear from any of you on how you've dealt with your losses with the headaches or any other ailments you suffer from. I think we can learn a lot from each other and find strength in fellowship.

Revision Surgery - The Rundown

I'm at 3.5 weeks post-op and starting to feel ready to spend time at the computer. The revision surgery went well and thus far my recovery is easier than it was with my last surgery. I'll focus on the surgery in this entry and describe my recovery in another. You can see the incision photos on the Post-Op Pictures tab or by clicking here.


My neurosurgeon was much more thorough than my pain doc who performed the last surgery. First, in our pre-op appointment he had me show him exactly where my pain was. He touched my head to make sure he understood. He consulted with the St. Jude reps present in the appointment & they all came to the consensus that I needed the standard lead placement (a "V" shape over the occipital nerves) but higher up so that it could attend to my temple pain. My prior surgeon didn't even have a pre-op appointment with me, and he never touched my head to get an accurate feel for where my pain was.

Standard "V" shape lead placement

On the day of the surgery, I was put in my own pre-op room in the hospital. My surgeon came in and again asked me to show him exactly where my pain was. Then he used his hands to show me on my head where the leads would be placed. This second confirmation calmed me a lot & eased my worries that it would be a repeat of last time.

Just like in my prior surgery, I was consciously sedated for the lead placement so that I could give feedback when they tested the unit to make sure the leads were stimulating the proper areas. The surgeon first removed the existing leads and then placed the new leads. After the leads were tested and I confirmed they were working properly, I was put all the way under for the remainder of the surgery. The surgeon added a lead anchor which is designed to keep the leads from migrating, a risk that is much higher for ONS than spinal cord stimulation because the leads are so far away from the battery pack. The leads itself were long enough to run directly to the battery, so no wires or connectors were added. There is enough slack in the leads so that I can bend and twist without dislodging the leads. Two incisions were made on my back to facilitate the tunneling of the leads down to the battery pack. A tube is used to feed the leads through, but because my back is so lean, there isn't a lot of stretch to my skin. So, the surgeon made 2 small incisions to add some give. Another incision was added just above the battery pack so that they could plug the leads into the battery.

Example of a lead anchor via St. Jude

When I woke up in recovery, I was immediately administered IV pain medication that helped my pain significantly. My parents and boyfriend came in and told me the surgeon was happy with the results. However, because of the difficulty running the leads down my back, there was trauma to my neck and back and my surgeon anticipated it would be very difficult for me to manage the pain on my own. So, he checked me into the hospital to have the nurses help me manage the pain. He recommended I stay the weekend, but told me to stay as long as I needed to. He mentioned that one patient of his stayed 7 nights.

I was put in my own room on the neurology floor. Upon inspection, I saw that I had a large bandage on my head and 3 on my back (one over the battery and 2 more on my upper back). More of my hair was shaved than last time, but that didn't bother me much because it's worth it to get relief! I was given IV pain meds every 3 hours and had the option to take a breakthrough pain pill every 4 hours. I was administered IV antibiotics twice a day. The nurses were very nice, the hospital food was decent (I could order from a menu), there was a cot for my boyfriend to sleep on, and they had cable and wifi so I was quite comfortable. The downside was that someone was in my room every hour and a half to give me meds or take my vitals, so sleeping was almost impossible. I was able to shower as long as I just washed the front of my body and left my hair alone. I stayed 4 nights but was still hesitant about going home. I was afraid I wouldn't be able to manage my pain. I have a contract with my current pain doctor, so he is the only one that can write prescriptions for narcotics. Prior to the surgery, he added a few pills to my normal, daily pain meds, but I was pretty sure it wouldn't be up to the task to manage my post-surgical pain. My surgeon called my pain doc and explained that my surgery was difficult and that I was in more pain than expected, so a new prescription was added.

The last night I spent in the hospital, a shock came when the neurosurgeon removed the bandage from my head. If you recall from my last surgery, the incisions on my head were only a couple of centimeters long. So imagine my surprise when i saw this! (Scroll down the page to get to the revision surgery photos) I call it my head zipper. There were ~14 stitches on my head. The other 3 incisions were fairly close to the same size as my incisions with my last surgery.

So even with the hospital stay, the experience was so much better than my original permanent implant surgery. I'm very optimistic about my recovery and about the pain-reduction potential of the new lead placement.

Revision Post-Op Update

I made it out of my revision surgery ok. The surgery was more difficult than the neurosurgeon anticipated. I don't have hardly any fat on my back, so tunneling the wires was difficult. As a result, there was a lot of trauma to my neck and back. He admitted me into my own room in the hospital and told me to stay as long as I needed help managing my pain, but he suggested 3 nights to start. I ended up staying 4 nights and just got home today! I'm still struggling to manage my post-op pain so this will be a short post. I don't get the stim programmed until next Monday anyway, so there's not much to report other than the experience of the surgery which was leaps and bounds better than my last surgery! Until then I will put my bionic powers on hold and rest up.

As always, please feel free to send me e-mails with any questions you might have but know that it might be a week before I can respond to them.

Revision Surgery Scheduled

My revision surgery has been scheduled for March 9! I'm both excited and nervous about it. I'm excited because I feel confident in the surgeon's lead placement plan and at the prospect of finally getting some pain relief from this whole ordeal. I'm nervous because the recovery was pretty hard last time and there is the prospect that the stimulator won't be effective at all.

My neurosurgeon and stimulator rep agreed that the best lead placement for me would be the traditional occipital placement, but slightly higher. The traditional placement is 2 octrodes placed in a "v" shape over the occipital nerves. They're placing them higher on my head in hopes to get coverage to my auriculotemporal nerves. I had a similar placement for my trial on the right side & it provided much better pain relief than the placement I currently have.

They will have to reopen all of my incisions down to my battery pack. My leads are super long and plug directly into the battery pack, eliminating the need for a connector and wires between the leads & battery pack. So they will remove the current leads, place the new ones, and tunnel them down to the battery pack. I will have some back discomfort again from the tunneling process & from the battery pack incision.

I've been meaning to blog more in the last few months about resources available to those of us who are mostly house-bound, but my pain levels have been pretty high and I've found it hard to concentrate. Hopefully I'll be able to write another entry before the surgery. If not, I'll report as soon as I can how it goes.

Neurosurgeon Appointment Set Up

My neurosurgeon finally got back with  me. I have an appointment set up for February 14. The St. Jude rep who was in my 1st surgery will be there and the neuro will discuss his plan. I'm still feeling restless and really wanting to get on with the revision surgery, but at least there's an appointment set up to get things moving.

In the meantime, I don't even have the stimulator on anymore. I find that my headaches are less intense with it off, which just further proves the lead configuration was more harmful than helpful. :/

Here's a video that made me laugh. I hope it helps you get your mind off your pain for a few seconds. :)

Post-Holidays Update

Happy New Year everyone! I hope your holidays were as pain-free as possible. Sorry I've been away for a while. I made 4 trips back home in the period of 2 months, and as I've mentioned before travel is the worst thing for my pain and fatigue so I've been spending a lot of time recovering. Then there was that whole Christmas hoopla where I learned to shop as efficiently as possible given I couldn't drive or spend much time on the computer. So here is a quick run-down on what is going on.

First, The long-acting pain meds seem to be helping with my normal chronic pain, but whenever the headache flares (which seems to be often and sometimes for days at a time), it's not managing my pain. This was true of my short-acting opiates, so I still prefer the long-acting because of the fewer pills and fewer highs and lows in my pain during the day.

I saw the neurosurgeon the new pain doc referred me to. He was, um, interesting. I was warned before seeing him that neurosurgeons don't always have the best bedside manner. He wasn't rude, just hard to communicate with. What he did do was actually touch my head to understand my pain patterns (something my pain doc/surgeon never did before my surgery). He had a skull x-ray so he could see where the leads are now, and I explained where I was experiencing deficiencies in coverage (read: everywhere). He gave me a preliminary lead placement strategy. He will move the right lead (which now sits directly in the middle of my head) to the right so it can cover both the right greater and lesser occipital nerves. The left AT lead (which currently resides above my ear) will be moved to the left, upper quadrant of my occipital area in hopes it can provide coverage to the left AT nerve and left occipital nerves. When I asked if he thought the lead configuration could cover all of my painful areas, his answer was, "We'll see." I wasn't thrilled with this response because I'm so nervous about having another bum lead placement. But the truth is until they get the leads in and test them in the OR, we really don't know which areas they'll cover.

This makes me nervous because even though you are conscious when they turn on the unit in the OR, you are heavily sedated. I don't know how much valuable feedback I can give in that state (and obviously I didn't do well the first go-round). But I also know that some uncertainty is inherent in the nature of the procedure, so despite my misgivings and want to control it all I will go forward with his recommendations.

He sent me off for an x-ray of my entire spine and abdomen so he can see the actual unit in my body and where all the connections are. This helps him plan how far down the unit he needs to operate. The hope is that he won't have to go further down than my mid-back where we know there is a connection that will have to be rewired. After he gets the x-rays and talks to my stimulator rep, he is going to contact me for our next appointment to discuss the game plan.

I was also struck with one of my super headaches (combo occipital headache with migraine w/o aura) the week before Christmas. I've only had 3 of these before, and one resulted in a trip to urgent care for an injection of Demerol and Phenergan. So, after 4 days of this debilitating headache and maxing out my Maxalt dosage for the week, I hit the urgent care and got the Demerol cocktail. It seemed to be working until the next evening when the headache came back more intensely. I made it 2 more days before I gave in and went to the ER. Most reputable medical sources on the internet suggest you go to the ER if a migraine goes past 3 days, but more than anything I went because I was afraid it wouldn't go away. Ever. At the ER I got an IV of Dilaudid (hydromorphone), a powerful narcotic. It worked immediately and definitely had some strange side effects. My legs felt very heavy at first and I became more talkative (an embarrassing side effect of most narcotics for me), and an hour later I became irritable and very itchy. But despite the trouble of being at the ER until 3:00 AM, I'm glad that headache finally buggered off. It might have been the worst I've ever had.

I was definitely impressed by the ER visit. We were lucky to get into a room within 20 minutes of checking and were discharged in 3 hours. It definitely wasn't my preferred way of dealing with  migraines (I had many a conversation with my boyfriend about why I didn't think migraines were an emergency) but I'm very glad I went. They were courteous, sympathetic to my plight, and as efficient as they could be.

So for now I'm spending a lot of time resting, as I've tied most activities  - even computer work -to aggravating my headaches and fatigue. Also the cooler weather is hellish on fibromyalgia pain, so many an hour is spent under my heated throw blanket. I'm trying to stay upbeat and hopeful as I wait for the call from the neurosurgeon. That has been greatly helped by several communities I've found on social networks for people with chronic illness. I'm able to interact with people who "get it" and even get advice and feedback when needed. It has been helpful because my friends' visits dwindled dramatically in the last 2 months. Two of them had babies and with the holidays, most people have been too busy to come by. I plan to address how online friends can be saviors to those of us homebound and cut off from the world due to chronic illness in a future post.

It's also been a difficult time dealing with the uncertainty of this upcoming surgery because there is no way to know if it will be my last. It's possible that they leads won't be placed optimally or will migrate at some point. To add to that stress, I've essentially consulted 3 doctors about the lead placement and each has a different opinion. Each strategy makes sense to me, but I automatically throw out my original surgeon's plan because of my distrust towards him. I've decided that the best I can do is to approach my neurosurgeon with all of the strategies I've been given and ask him why his is the best. I hope he can answer that in a way that gives me more confidence, but I might just have to take another leap of faith like I did when I first considered ONS.

I'm afraid, though. This surgery has diminished me. It left me in more pain with more problems to fix. Even though I try to convey a positive message on here not just for you readers but for my own peace of mind, the truth is that I'm very worried about what another surgery could do to me. But as my boyfriend pointed out during one of my occasional freakouts the other night when I was convinced I just wanted the entire ONS unit pulled out and to be left alone curled up under my electric throw blanket forever, even if they restored me to what I was like before the surgery, I was still miserable. Still homebound. Still restricted. Still scared. This is my hope. And really, when you're stuck in bed nearly incapacitated by constant pain, hope is precious. So I'll take it.