The First Day of the Rest of My Life – Neurostimulator Implant Surgery

“The only true happiness comes from the certainty that you have made a better life for others.” ~ Dahlai Lama

December 5th, 2012 will forever mark the most important day in my life. After battling “Chronic Daily Migraines” for over 16 years, I had hope and a break from the constant, debilitating pain, and I have a quality life again. I had surgery to permanently implant a device called a Neurostimulator. The Neurostimulator functions as a “pacemaker for pain”, that delivers electrical pulses that block the pain signals being sent to the brain. Tiny wires (or leads) were placed under my skin, around my skull, routed to my forehead and the back of my neck, connecting to the device that is implanted in my chest, just under my clavicle. To perform the surgery, my head was completely shaved to provide the Neurosurgeon with access to my skull to make several incisions and to route the leads. Below are some lovely picture of me post-surgery.

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Because I suffered from daily migraines, I keep the Neurostimulator on at all times. With a remote (pictured below), I can control the amount of stimulation depending on the pain that I am experiencing. I have multiple programs in my remote that can change the stimulation location to the front, back, or both sides of my head. I can increase the stimulation to further block pain signals if I’m having a rough day, but generally I do not have to make adjustments, and I have never changed the stimulation program. I keep it turned on at all times with the leads turned on around my entire head. The stimulation is very mild and I’ve adjusted to it and don’t feel it unless I really stop to think about it.

Below is a picture of me that shows the implant in my chest. It sticks out slightly, and is a little larger than a golf ball. The leads stick out slightly on the right side of my neck, leading from my battery to a small clamp that is behind my right ear that holds the leads in place. I can feel the leads in my forehead if I run hand fingers across them, but otherwise I would never know they are there and they are not visible. Occasionally I notice in pictures that have been taken of me since my surgery that my left eye brow is raised (as it is in the picture below), which I imagine is an effect of the stimulation in my forehead. I suppose it just adds character ;). And needless to say, after a year, my hair has grown back!

Once a week I have to charge my battery. It takes about 30 minutes, and requires me to sit still so the charging wand stays in place directly on top of the battery. Similar to pacemakers, this battery will not last forever, and will one day have to be surgically removed and replaced. Thankfully the battery has an estimated life span of about 10 years.

This surgery is NOT a cure, and I feel this is important to emphasize because what little information I have read often makes false claims in this regard. Migraine is a disease that 30+ million people in the US suffer from, that’s nearly 10% of the population. It is the most common neurological disorder, yet there is very limited research conducted. This contributes to the fact that migraines are very misunderstood, and extremely hard to treat and manage. I still suffer from migraines, but they are now controlled. I no longer have daily migraines. I no longer take abortive medication on a daily basis to attempt to ease the migraine pain. I DO still have migraines, and I DO still have rough days and I DO still take preventative and abortive medication. The difference now is that I can generally take one dose of medication and relieve the pain, as opposed to dose, after dose, after dose, with no relief. However, I do still experience days a couple times a month where I have to call it quits, taking more medication than I’d like, retreating to a dark room and waiting for sleep to come to ease the pain.

My journey to this surgery was 16 years LONG, and I will chronicle my story in this blog as I feel it is important to understand where it all started and how I got to where I am today. In May 2012, I was at a breaking point (again), and my Neurologist finally presented me the option of the Neurostimulator surgery. It was time for me to explore this option, because I had exhausted every other possibility, and I was as hopeless and helpless as I’d ever been in my entire life. Something had to change, because I was emotionally and physically checked out on life.

The Neurostimulator Process

I made an appointment with the Neurosurgeon in May 2012, and the first available appointment was July 31, 2012. A long time to wait, but I felt hopeful for the first time in as long as I could remember; there was possibly something that could help. On the other hand, I was fearful, because if I was a candidate for this surgery and either my insurance didn’t approve it, or it didn’t work, then what…….

On July 31, 2012, I had my consult with Dr. William Rosenberg with the Midwest Neurosurgery Associates in Kansas City, MO. Upon review of my medical history, he explained that without a doubt, I was a candidate for the surgery. What qualified me is that I had exhausted all other treatment options including but NOT limited to: countless medications, monthly ER visits, multiple migraine treatment center inpatient visits, Botox, psychology, psychiatry, physical therapy, acupuncture…(you get the point). Because I experience migraine pain in both the front and back of my head and neck, it was decided that I would have leads implanted in both locations. (For some patients, leads are implanted in just one location). Dr. Rosenberg required that I complete a psychiatric evaluation prior to his submitting a letter to insurance. This was intended to ensure that there were no underlying issues that had not been addressed, because this surgery was not to be taken lightly. I was annoyed by this step in the process, but I understood the intent. I passed the eval, and the next step was underway.

He submitted a letter to my insurance company, and within one week I received the response; I was approved for the trial surgery and upon review of the results of the trial, if successful, they would submit another letter, and approve the permanent surgery at that time. I started diligently documenting my migraines in a journal so we could review the results of the pain relief before and after the trial. Dr. Rosenberg required that I experience a 50% or greater pain reduction to proceed with the permanent surgery, so the journaling was a critical step.

The Trial Surgery

October 15, 2012 was the date of my Neurostimulator trial surgery. My insurance required a 15-day trial, which is unusual as typically trials are between 3-7 days. Dr. Rosenberg made small incisions on both sides of the back of my head at the hairline, and routed the wires through the back of my neck and forehead. The wires were external and were encased in 10 “telephone wires” that all connected to the external stimulator battery that I stored in a very fashionable “fanny pack”. As soon as I woke in the hospital, and the stimulator battery was programmed, I felt relief. And for the 15-day period of the trial, I was virtually pain free, and took very little abortive medication. Outside of the mild annoyance of not being able to shower and due to my appearance, I was basically on self-imposed house arrest. The St. Jude Medical rep (the manufacturer of the device) contacted me on a near daily basis to check in and ensure I was comfortable with the stimulation and to answer my numerous questions. I continued to chart my migraine pain in the journal, and the results were astounding. I had greater than a 50% decrease in migraine pain; I estimated it closer to 75%. While I was excited to have the trial device removed so I could finally shower, it was a difficult adjustment to go from living with tolerable to minimal pain for 15-days, immediately returning to life with daily, debilitating pain. Without question, Dr. Rosenberg submitted the letter to my insurance for approval of the permanent implant, and one week later I received the response, and needless to say, I was approved!

This surgery has not yet been FDA approved, so there is little useful information about it for migraine sufferers. The device is, however, being used in Europe with great success. In trials, 65% of patients reported good or excellent headache relief after one year, 67% reported the device improved their quality of life, and 88% said they would recommend the procedure to someone else. With rates so astonishing, it is encouraging news for potential FDA approval into the US market in the near future.

The documentation that was provided to me by St. Jude Medical and my Neurosurgeon was all related to the implant of this device for chronic back pain. While this was helpful to review, it still left me with many questions about how it would truly work for migraines. The spinal stimulator surgery is FDA approved and is more commonly known. I can only hope that in the near future the FDA approves this surgery for migraines so information is more readily available to migraine patients and care providers.

In my opinion, Neurologists, pain management physicians and insurance companies are not properly educated about this surgery and the positive, life changing effect that it can have. And for this reason, I am sharing my story.