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.

Good News

Last week I had an appointment with a new pain doctor to discuss my stimulator. It went really well and I feel hopeful that pain relief is on the horizon.

The pain doctor said that my lead placement did not make sense. I brought color coded pain charts to show him where my pain was, where my leads were, and where I felt stimulation so he was able to see the holes where I needed coverage.  He said that the lead configuration was not going to be able to provide me with adequate coverage and pain relief. Moreover, my doctor never should have implanted a different lead configuration for my permanent implant without doing a trial with it first. So, after my first trial left me wanting more coverage he really should have done another trial with his proposed lead configuration.

In his opinion, I shouldn't even try to get coverage to the left AT nerve. He thinks I should have two, 8-contact leads in a "v" pattern on the back of my head covering both lesser and greater occipital nerves on the left and right. He thinks that because occipital nerve pain refers pain around to the temples and behind the eyes, that covering the occipital nerves well could in time stop that referral pattern. He also said that even if the AT nerve pain persisted that he thinks I would be happier with great coverage on the back of my head instead of this crappy, spotty coverage I have now. He referred me to a neurosurgeon that is supposed to have a lot of experience with this surgery and I see him on the 21st.

I also showed him the prescriptions I was on for my pain. My current doctor has a 3-pronged medication approach to occipital neuralgia - opiates, anti-convulsants (for nerve pain), and muscle relaxers. I mentioned in a previous post that I was still in constant, severe pain almost all the time despite these meds and that my current doctor insisted nothing else could be done to help me. Well the new doctor said that was untrue. He said that changing me from short-acting pain meds to long-acting pain meds would be a good first step because I am in constant pain. Also, there are a variety of anti-convulsants and muscle relaxers we have yet to try that could be more effective. Overall, I left feeling that this doctor really listened to me and had a good handle on how to proceed from here with my care. After I get the new surgery scheduled, I will leave my current pain doctor and transfer my care to the new doctor.

In the meantime, I had to go back to my current doctor to get medication refills. I asked for long-acting pain meds and he prescribed them to me. I couldn't believe that he spent the entire last year insisting he couldn't give me anything different, and then after a mere suggestion I had a new script! Turns out, they are more helpful. I'm not taking any more medication than I was before, but I'm down to 2 pills a day instead of 5 and the extended release quality of the new medication keeps me from having highs and lows with my pain during the day. My current doctor also had a bunch of suggestions on how to fix my lead configuration, all of which require a neurosurgeon. He still thinks he can get coverage to that left AT nerve. I refuse to let him operate on me again because I don't trust him, but I am curious to see if the neurosurgeon I'm going to visit thinks I should try for left AT nerve coverage or not.

I'm so ready to get this stimulator fixed. My life has been put on indefinite hold since the surgery, and I'm ready to move on. I try to stay busy and not worry constantly about my stimulator and my pain, but it's hard to divert the mind from a persistent, brain-rattling torment. Speaking of, I need to sign off from this now. My neck and head are warning me that if I don't quit soon they will make me pay. Wishing everyone a day of less pain and more fun.

Update and My Pain Management Crisis

I have an appointment with a new pain doctor on November 28 to discuss my ONS implant. I plan to ask him what he would do differently with my leads given my pain patterns and discuss pain medications. A big issue I've had since my surgery is that my headaches have gotten worse due to the bum lead placement and my doctor will not change my pain medicine type or dosage. I take only 1/2 the maximum allowed dosage per day and take one of the weaker opiate pain killers. I would even be open to changing my anti-convulsant if he thought that would help, but he seems to think the medication combination he has given me is the best option out there.

If I stay perfectly still on the couch all day, the pain meds I'm allotted per day handle my headache pain. If I try to crochet, drive to the doctor, go out to eat, try to eat any meat or hard and crunchy foods, or even run to pick up a prescription, my pain is much too intense to be managed by my meds. I told the PA at my pain doc that since the surgery when I put on sunglasses or brush my hair on the left side, my entire left AT and left lesser occipital nerves feel like they're on fire for hours and that I needed something different to control the pain. All she said was, "Huh. I don't know what that is. Guess you should ask the doctor. Make an appointment in 4 weeks." I drove home in tears.

I know I should have pressed her harder, but I've been begging them for months to change my pain meds because they just were not controlling my pain to a manageable level and they have ducked and dodged that request over and over. It's frustrating because I feel like I've proven that I want to help my pain without pills by having so many nerve blocks, ablations, epidural steroid shots, alternative treatments, and finally the ONS implant. Additionally, I have 2 other friends who see my same doc that are able to live fairly active lives and get much stronger pain meds than I have for lesser conditions.

This is a frequent complaint I hear from other chronic pain patients. It's strange to me because oftentimes you hear about our country's over-prescribing problem and how oxycontin is given out like candy by some doctors, but most people I know with chronic pain can't even get non-opiate pain relievers from their doctors. This is a subject I know is contentious. I have addiction in my genes and have watched family members struggle with it, so I did not undertake the decision to go on opiates lightly. I also know that there are irresponsible doctors out there who do hand out oxycontin for a muscle ache. Despite these issues, I don't think that means pain doctors can ignore their patients. If my doctor thinks he really has done all he can do for me, he should tell me that and refer me out.

Well, I'll get off my soapbox now. I have a big week coming up with car travel back home to see my parents for Thanksgiving. Riding in cars is one of the worst things for my pain, so it will be a difficult couple of days. However, I get to see my 11 month-old niece and she's worth the pain it takes to get there. :) I hope everyone has a great Thanksgiving and can focus on gratitude despite the pain you're feeling.

What Happened

I've been putting off writing about this since I started the blog because I really hoped that the surgery would end up a success even though the process was terrible. But now that I'm 14 weeks post-op, the verdict is in. My leads will have to be redone.

To begin this story, I'll start with the trial stimulator removal. My doctor didn't show up for this but had his nurse practitioner take the leads out. I told her for the permanent implant I would need coverage at the left auriculotemporal (AT) nerve. The trial leads did not cover the nerve at all. My pain is most intense there, so without coverage to that nerve ONS seemed like a waste of time. I asked if I should set up a specific pre-op appointment with my doctor to discuss this need. She told me no - she would make a note in my file and there was no need for a pre-op.

So fast forward to my permanent implantation date. After I'd been consciously sedated and placed faced down on the O.R. table, my surgeon asked where I wanted my leads and where my pain was located. I was immediately struck by fear because I was sedated and unable to move my arms to show him what I needed. I tried my best to explain, but it was difficult through the haze of drugs. Then he began asking me to pick where I needed coverage the most and told me my entire head could not get coverage, something that was news to me. Once he decided his game plan, he asked for 3 leads. One of the leads, called a 4-wide because there are 4 contact points widely placed, was not available. He began demanding it anyway, and the stimulator rep started arguing with him that he didn't need a 4-wide and could do it another way. I began to get really nervous at this point and started physically shaking. I knew something was wrong but I didn't know what to do about it. The doc and the rep then came to some kind of agreementand that was the last thing I remember. When I woke up in recovery, my doctor had gone home without talking to me or my boyfriend in the waiting room.

Between the surgery and my first follow-up, I hardly used my stimulator because the left lead kept stimulating my jaw (something that has not ever gone away). I thought I had 3 leads because that's what we discussed, but I didn't find out until my follow-up that I only had two 8-contact point leads! This made no sense to me because my ENTIRE head hurts. How could only 2 leads stimulate all the branches of the greater and lesser occipital nerves and the left AT nerve? A feeling of dread swept over me and I felt then that the leads were not going to work. Because the doctor and reps kept emphasizing that I needed to wait until I was completely healed before I could come to a verdict on the effectiveness of the stimulator, I decided to withhold judgment until the 12-week healing period was complete. I did. I got reprogrammed as often as I could - determined to make this damn thing work because I didn't want to go through another surgery.

I confronted my doctor and only got a carefully planned defense back from him. I knew after the 12 weeks were over I would be finding a new doctor to take over my pain management because I no longer trusted him. It was a tough 12 weeks. I blamed myself for trusting a doctor that obviously didn't think I deserved better care. I had to sit here knowing that as I recovered from this surgery another one was probably on the horizon. I had to see my doctor multiple times to get post-op checks, med refills, and to discuss the fact the coverage was crap. Every time I saw him I felt like I was being betrayed again. Those of us with chronic, incurable illness depend on our doctors considerably for a better life. The one doctor I really trusted has crushed my faith and left me questioning all of them.

I found another pain doctor in town who does ONS surgery. I plan to go see him and consult about moving my leads or doing an entirely new implantation. As for my current doctor, I haven't decided what I'm going to do about him. What I can do now, is give you a list of tips I think are important to keep in mind before undergoing ONS surgery:

1. Make sure your doctor spends time with you figuring out your pain patterns. You can draw them on a pain chart or just have him feel around on your head and create his/her own depiction. This can also be done with selective nerve blocks to certain cranial nerves responsible for head pain.  If the pain goes away after the nerve block, you know you've found the culprit.

2. Insist on a detailed pre-op appointment. When there, ask which leads the doctor plans to use and where. Ask which nerves they are intended to stimulate and how that will translate into coverage of your painful areas.

3. Ask how many incisions are planned for lead implantation, running the wires, and battery pack installation.

4. Ask where the battery pack will be installed. The typical site is in the low back. If your doctor has an alternate site, ask why.

5. Ask if your doctor plans to include enough wire slack so that you can bend over. You don't want to reach for something off the floor and feel the wires tug on your leads.

5. Ask how long your healing time will be and your recovery time. These are two different things, something I didn't realize.

6. Ask about the type of anesthesia used.

7. Ask how many of these surgeries the doctor has performed and how often revisions are needed.

8. Ask for testimonials. Each rep from the stimulator company has former patients willing to share their stories. Try to get in touch with these people.

I'm incredibly upset and frustrated, but I have a great support system and continue to practice acceptance around it. I just hope that my experience can help those of you planning for your own ONS surgery. Remember that you are an important patient and deserve to be heard. Don't be afraid to ask questions. If you feel any doubt about the doctor you have, seek a 2nd opinion. It's your body. It's your life. Be your own advocate.