Thursday, January 5, 2012

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.


  1. Hi,
    I am going to be getting an occiptal nerve stimulator and would love to talk to someone who has gone thru it. I am 30 yrs. old and have had chronic headaches for 16 yrs. My headaches are so severe that I'm in bed most of the time and am unable to work. I would like to share more if you want to e-mail me. My address is
    I hope to hear from you soon.


  2. Thank you for sharing your journey with ON and dealing with your treatments. My daughter is heading in the same direction and I am attempting to educate ourselves with options. I had the other option, Microvascular Decompression for Trigeminal Neuralgia, over 30 years ago. It provided a permanent cure for my condition. After reading your trials with the stimulator, I wonder if it is worth it to put our daughter through ONS. How are you doing, now?