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.