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:
First Surgery
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…Second Surgery
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…Third Surgery
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…Fourth Surgery
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.Fifth Surgery
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…Sixth Surgery
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.Now
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.
Dear TDH Blog-Friends: I can’t tell you how grateful I am for this site. I particularly want to thank, once again, its Founder. Being a 30 year plus sufferer of the chronic daily (left sided) headache, I am at present at the crossroads and considering interventional approaches such as the above. It is a most helpful bit of anectodal information for we desperate cases (haha). I realize it is only one woman’s experience, but a very valid one at that, and will prayerfully take it into consideration with all the information I can siphon on the nerve stimulators, cryotheraphy of the trigeminal nerve, radiofrequency lesioning, and even deep brain stimulation if it could totally rid me of the blasted head pain.
A book of thanks for your Site, dear Founder-friend. I wish to keep closer ties with you and your friend Lisa as we all seem to be pretty much in the same boat, can help and pray for each other.
Franco
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You are so kind, Franco. I’m so glad to hear that the blog is helpful for you. I wish you the best of luck in your search for relief.
K
Lisa, I felt so sad to read about everything you’ve been through with your nerve stimulator. Thank you for sharing your story, and I agree with Kerrie’s suggestions for decision making.
Today I was doing some research on the web and typed in the words “migraine TMJ” (because I have both conditions). The search brought up one link by a dentist who claimed, and I quote: “If you suffer with complaints of migraine or other headache pain, we would like to make you aware of one basic scientific fact that is undeniable. TMJ or jaw joint dysfunction, is the major and usually the only cause of your suffering. Your doctors, including neurologist, have simply not received the dental training required to be able to diagnose TMJ problems and how they relate to your migraine or headache pain.”
The “evidence” goes on for pages and pages after that, and even sounds convincing–except I’m aware of the holes in the evidence, and that’s it’s been written by a dentist with something to sell. I’m not saying that TMJ can’t cause migraine, but to be so bold as to attribute it to being “usually the only cause of your suffering” is outrageous.
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It’s such an easy claim to make and if it doesn’t work for the patient, the doctor won’t have to deal with that person again because he or she won’t come back!
K
Thank you so much for this article, as well as your blog site. My pain doc has been fighting with my ins. co. to get access for this same stimulator; but I am at a point where I just don’t think it’s the right choice for me. It may be my last resort, as well, but it doesn’t seem to be as good as they were hoping. I’ve done my own research and am finding it a failure (in my opinion of course), or maybe just one of those, “too good to be true” items. Hopefully, this is just the beginning of something wonderful they can perfect.
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My headache specialist it Arizona told me that when they started their research, they thought the stimulators would be a grand slam for headache patients, but that’s it’s more like a stand-up double. I’m very happy for people who have been able to function better than they could before the surgery, but it’s not ready for prime time (which is, of course, the reason that they doing clinical trials!).
Best of luck with your search for relief. Three years ago, this felt like my last resort, but I keep finding more treatment ideas around every corner. I hope you’ll find the same.
Take care.
K
wow, that sounds so traumatic and invasive. i am so sorry to hear that this is such a difficult process for some. thanks for sharing this info. i had no idea about that therapy and have only read about it, so it is nice to get some first hand perspectives. do you know anyone who had great success with the stimulator??
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I have heard about people who have had great success, but only actually know one person. Her stimulator worked well, but she had to have a lead replaced at the end of May. She wound up with a lot of pain after the surgery and was still having trouble when I last heard from her. Her doctors said that they thought her nerves were acting up because of the inflammation following the surgery.
I guess the answer is no. But the people who are dissatisfied almost always rise to the top in any situation, so I expect that my “sample” is far from representative. Of course, I was satisfied when I started blogging…
K
Kerrie – Would you consider the stimulator to be a “last resort” if preventative medication doesn’t work? Or is this considered the primary mode of defense against some types of migraines?
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It’s absolutely a last resort. It is intended for people who have tried everything an nothing has provided relief — and this should be documented in medical records before someone is ready for one.
It may seem good because it’s drug-free, but it can be tempermental (i.e. leads slipping) and is quite physically restrictive. Even though the leads apparently don’t slip as much as my doctors thought they might, you still have to be very careful with it. After all, they don’t have it in their bodies, so how can they know what it’s really like? (Sorry, that was a bit of a tangent.)
Also I’m nervous because nerves are being mucked with, both during the surgery and through the lifetime of the device. It just seems like a bad idea for an uncertain treatment. Of course, I wouldn’t have said this 18 months ago.
That’s a long roundabout answer to your question. The short answer is yes, it’s a last resort that should come not only after trying all the available treatments, but also trying them in combination with one another.
K