My friend Lisa and I met through a headache forum. At the time, she also had a nerve stimulator, so we e-mailed back and forth and finally met in person when I was in her part of the country for Thanksgiving. Her experience with the nerve stimulator has been, quite simply, hell.
Lisa has had CDH for about 20 years and, like many of us, was desperate for relief after trying a gazillion ineffective treatments. She visited a new pain specialist in early 2005 and was relieved to finally get a definitive diagnosis. He said that she had trigeminal neuralgia and that nerve stimulation, which he happened to be doing research on, was a terrific way to treat it.
There are three branches of the trigeminal nerve. The first branch is ophthalmic branch, which covers the eye, eyebrows, forehead and frontal part of the scalp. While this branch is involved in headache and migraine pain, the two other branches are lower in the face and jaw. Trigeminal neuralgia is known to cause “excruciating, lightning strikes of facial pain, typically near the nose, lips, eyes or ears.” These aren’t Lisa’s CDH symptoms.
The ophthalmic branch was targeted by Lisa’s stimulator. Her battery was in her chest and her leads snaked up her shoulder across the side of her head and to her forehead.
Here are the details from Lisa:
The two-week trial, where he implanted the leads in my forehead, with the wires hanging out of my head by my temples, down to my chest where I had to attach them to a receiver that I wore in a fanny pack. Two weeks later I had my…
The whole system was implanted. He cut me on both sides of my head, near the temple area, and tunneled the leads up in the peripheral nerve area. He then tunneled the wires down behind my ears, cut about an inch on both sides of my neck in order to tunnel them down to my chest where he cut me open to implant the rechargeable receiver device. This lasted approximately two months before I had my…
The lead on the left side of my head migrated from above my eye over toward my ear. The right lead eroded (started forcing its way out of the side of my head), so had to have the whole system removed. After recovering and waiting two or three months, I had my…
This time he cut the right side of my head in the temple area where he tunneled both leads across my forehead, then he cut on the same side, behind my ear where he anchored the leads and tunneled them down to my chest where he cut open the same area that he cut open during the first surgery and implanted the rechargeable receiver.
The lead on the left side of my forehead stopped working altogether, so he supposedly took the whole system out, cutting me in those same areas. There were complications during recovery (before leaving the hospital), so he had to perform my sixth surgery, that same day as my fifth surgery, and insert a tube in my chest for drainage…
Cutting my chest open again, in the same area, and inserting a tube for drainage because I had a “bleeder.”
Seventh Surgery, Two Weeks Later
Removed the tube in my chest, and sent me to another surgeon because the area where the tube was had not started to heal from the inside out — so the other surgeon sliced my chest open in his office. The cut was about 5 inches wide and 5 inches deep. Had to pack that area with gauze for two months before the skin started to heal from the inside out.
Had MRI done in April. It showed that I still have metal in my head. Supposedly, its the anchor that was embedded down in my head to hold the leads in place. It was left in my head, without my knowledge, and I was told that the doctor would have had to cut a bigger hole in my head to remove it… So, I can leave the metal in my head or have another surgery to remove it.
Now, I’m still having daily chronic headaches. My pain level is usually no lower than a 5, but usually can deal with it unless it gets higher. The highest it has gotten lately was about an 8.
I honestly cannot tell you if the stimulator worked. I think I made myself believe that it worked great after the first implantation. After I had the second one, it did not work well at all.
I’m not posting this to scare you. Lisa’s experience is extremely uncommon, but it happened. Desperation can make you blind. It has certainly happened to me. Although I want to protect you all, I obviously don’t have that control. But I do have some suggestions, garnered from my own and Lisa’s experiences, that may help your decision-making.
- Take someone with you to your appointments. Make sure that person will stand up for you and ask the questions that you may be too afraid to voice.
- Know what you’re getting into and do your research about the doc. If a doctor says he or she is doing research, ask to see what’s published and who the other researchers are.
- Take all your questions to your doc — if they aren’t answered satisfactorily, take a hard look at the doctor and the treatment before agreeing to it.
- If something seems too good to be true, like an immediate definitive diagnosis after 20 years of pain, it probably is.
- Most of all, remember that you only have one body. It may not be functioning how you want it to, but that may be better than unknown consequences.