My headache story

My headache story – Part 7: Neurostimulator

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In this series of posts I try to describe my life with the beast as accurate as possible. Click the links below to read the previous parts of my story. In this post I talk about how I received my SPG neurostimulator.

Right time, right place…

…and unfortunately the right severity of cluster headaches to qualify for surgery. Chronic cluster headaches with inadequate response to medication. In the previous part I wrote that prof. Paemeleire had a new kind of neurostimulator available to implant in cluster headache patients. This was at the end of August of 2013, the surgery could happen on a very short-term, but because my family and me had planned a holiday at the end of september, the surgery was planned for the beginning of October. All preparations were done before my vacation.
A clinical trial with this neurostimulator showed that it was able to abort about 70% of attacks. That’s what it was developed for: acute treatment of cluster headache attacks. But, during the trial it appeared that some test patients had less attacks than before. Further investigation is needed to determine a prophylactic effect of the neurostimulator. All in all, it was a viable option to try: I got it for free and the surgery is unobtrusive en 100% reversible without permanent damage.

The ATI neurostimulator

ATI neurostimulator
This is the neurostimulator that’s in my head.

Before continuing my story I will first try to explain what the neurostimulator is exactly. On the left there’s a picture of the actual implant. It’s a very small block that has openings on one side to screw it tight and on the other side there’s a flexible thread with 6 dark spots. This device was put into place through a small incision in my gums above the molars and is located somewhere in a cavity behind my cheekbone. The thread is wrapped around the sphenopalatine ganglion (SPG), this is nerve bundle located somewhere behind the nose. Together with the GON (greater occipital nerve, remember the GON blocks in part 6 of my story?) it is thought that plays a significant role in during a cluster headache attack.

Remote ATI neurostimulator
My remote to activate the ATI neurostimulator.

Everybody still with me? OK, those 6 dark spots on the thread of the neurostimulator are electrodes. The theory is that by putting a current on the right electrodes, the SPG will receive a small electric current and the pain signal to the brains is blocked. The device itself does not have a battery, so it is not necessary to have surgery every couple of years to replace the batteries. Instead the power is delivered through a remote that needs to be held against the cheek. The power is delivered through induction, same way some electrical devices (like an Apple Watch) are charged wirelessly. On the right is a picture of my remote. To configure the device there are a couple of parameters that can be set by the neurologist. It’s a bit of a trial and error to determine the correct settings.


Back to my story. To be able to have the surgery I had to stop taking Depakine, because it has an effect on blood concretion. I also had to get a CT scan of my head to send to ATI. They made a nice 3D image of it to determine the ideal location for the neurostimulator. Added purpose: the surgeons could also see the easiest way in for the device. Fun fact: for the surgeons it would be the first time they performed the operation. At least on a living human being. Prof. Paemeleire told me they had some practice on corpses and assured me that there would be no visible scars left after the surgery.
Near the end of September I was able to enjoy a pain-free vacation after which I made an appointment with the surgeons to get some info on the surgery. They showed me how the device was going to be put into place and to be sure, they checked my mouth to see how easy or difficult it was going to be access the entry point. No problem whatsoever it was decided. There was however a small risk: close to the SPG there is an artery, if that got damaged the surgery would have to stop. Also a lot of nerves around the gums near the top of the mouth would be broken during surgery, temporarily rendering a large portion of the mouth numb.

The big day

Alright, vacation over, surgery time. In the morning my wife Ellen and I drove to the university hospital in Ghent. Surgery was scheduled around noon, so plenty of time to go to my room and put on my sexy hospital gown. I put my triptans and verapamil in the drawer and started reading, waiting for the nurse to roll me to the operating room. I was just sitting on the bed when a nurse came in to tell me a slot opened and I had to go in for surgery now. I said goodbye to my wife and was rolled into the operating room. People of ATI were present to observe the surgeons and to answer questions. I was put on an I.V., got a mask, the anesthesiologist turned a knob and everything went fuzzy. I was out.

A rude awakening

All of a sudden I was knocked wide awake by an attack. A full hour before they expected me to wake up, the beast did it for me. It’s really that heavy. In recovery there were no triptans so I asked a nurse for oxygen, she promptly gave it to me together with a shot in my thigh and some extra painkillers in the I.V. I was rocking heavily in the bed because of the pain and after an excruciating 10 minutes, which seemed to last for hours, the pain was starting to fade away. It was some serious stuff they gave me. After half an hour they returned me to my room.


If everything was OK, I could go home the next day. The surgeons checked the wound and on my indication that all was well they sent me home. The expected numbness of the upper right part of my mouth lasted for about two months. That was actually a positive side effect, because I also couldn’t feel pain from the wound. Already a week later the stitches were taken out of my mouth. Another advantage of this kind of surgery: a mouth heals very quickly.

Programming of the settings of the neurostimulator happened a month later on 13 November. How that went will be part 8 of my story!