Before getting a nerve stimulator, you must ask a ton of questions, not only of your doctor, but of other patients, and of yourself. With your doctor, take someone who knows how sick you are with you to your appointments to press for answers and ask follow-up questions in case you’re feeling too sick to advocate for yourself. Ask every single question you have, no matter how silly it may seem.
Ask Your Doctor
What percentage of patients receive relief from this device, both in research and in the doctor’s experience? What qualifies as relief? How many patients get complete relief? What about 50% relief? Ask for copies of peer-reviewed journal articles. Even if you don’t understand the articles and the data, you need to see what research the doctor is relying on. Have someone other than the doctor who will do the surgery review them, be it a friend or family member who is experienced in reading journal articles or your internist.
How many nerve stimulators has your doctor implanted and which regions of nerves do they target? Why do they target the particular nerves they do? What’s the research to support targeting these nerves?
What procedures does your doctor use to determine if a patient is a good candidate for nerve stimulation? Nerve blocks and trial stimulators are often used, though research indicates that they aren’t always predictive of whether or not a patient will find a permanent implant effective 1. How much do these procedures cost?
How many of patients, both in research and your doctor’s experience, go through a trial and do not get a permanent implant?
Which manufacturer and make of device will your doctor use? Why do they use that one? Ask for any literature they may have on the device and also look it up online. Ask to meet with the device representative your doctor works with. That’s one more knowledgeable person that you can ask questions.
How much does the stimulator and surgery cost? A 2012 ballpark estimate was $30,000 to $40,000 2. Very few insurance companies cover the cost, though some will pay for surgical fees if not the device itself. Is participating in a clinical trial an option? (This will likely cost you nothing, but there’s a chance you will be assigned to a control group that isn’t implanted with a stimulator at all.)
Find out how the procedure will be performed and if you will be fully sedated or not. I was sedated for all but the very end, when I had to tell the doctors where I felt the vibration of the stimulator to determine if it was in the right place. I felt no pain during the surgery. Other patients report being awake for the entire procedure. If you will not be fully sedated, ask if you will be numbed so as to not feel the pain.
What is the recovery time? How long before a patient gets relief after the permanent implant? (Some patients don’t get relief until six months after surgery 1.) Studies indicate that a patient’s migraines may worsen immediately following surgery. How long does this last? Has any of your doctor’s patients ever have a permanent worsening in their migraine frequency, severity, or duration from the procedure?
How many patients, both in research and your doctor’s practice, experience infection? What is the treatment? Does it ever require that the implant is removed? Is it then replaced? What are that patient’s remaining options?
In research and in your doctor’s experience, how many patients experience numbness or persistent pain at the site of the battery and/or leads? How severe is that pain? Does it interfere with a patient’s life? What are the treatment options for this? Does the pain cease if the stimulator is removed?
How many patients, in research and in your doctor’s experience, experience lead migration? What causes leads to move? What percentage of patients who have their leads surgically revised continue to experience relief from the stimulator after the second surgery? Do they have the same amount of relief as before the leads moved? How much do follow-up surgeries cost?
What activities, exercise, and physical movement are restricted by the implant? Be sure to ask about specific things that matter to you. The manufacturer’s website may have FAQs and the company rep can answer these questions in more detail.
How long does the battery last? Is it rechargeable? Will it need to be replaced? If so, how long do the batteries last in your device and what is the cost to have them replaced?
What if the implant is unsuccessful for you? What are your other treatment options? Will this doctor continuing seeing you as a patient if the stimulator doesn’t work out.
Ask your doctor to share your name with patients who are willing to talk to you about the procedure, both those for whom it has been successful and those who did not benefit from it. He or she may balk at “privacy issues,” but that is not a sufficient excuse. As long as a patient agrees to receiving a your information and contacting you, privacy is not being violated. If the doctor will not get you in touch with anyone, find a different doctor to do the procedure.
Ask Other Patients, Both Online and Referred by Your Doctor
Ask how long they’ve had the device, what percentage efficacy they believe it has had for them, if they’ve had any problems with infection or lead slippage and how issues were resolved, what their quality of life improvement has been, what they like and dislike about having the device, would they do it again. Ask if you can talk to that person’s relational partner, too, for another unique perspective.
Be wary of any numbers or percentages a patient quotes unless it is their personal experience (i.e. “I feel 30% better” or “I have 50% fewer migraine days”). The research can’t be distilled into easy numbers or percentages. I know because I tried to do just that. I pored over published articles, abstracts from conferences, and media coverage of the procedure. The numbers depend on how the data are sliced. You also have to take into account the number of patients in the study, whether it was a double-blind study, if there was a control group, what type of diagnosis the patients had, and whether they had confounding issues, like medication overuse headache.
Also be wary of anyone who pressures you in any way or only tells you the good stories, whether you’ve met the person through your doctor or online. It’s possible that their experience has been nothing but excellent, but those folks are in the minority. If you encounter someone on a forum or blog who sings the praises of their stimulators and/or doctors, find a polite way to ask they if they are compensated in any way for sharing their opinions. Compensation can be direct payment, a fee paid for referrals, or a discount on the surgical procedure or device for the patient or their referrals. This doesn’t invalidate the information they give you, but you should be aware of a potential bias.
Keep in mind this strange phenomenon among nerve stimulation patients: everyone seems to believe their doctor is a pioneer in using nerve stimulation for migraine and/or the techniques that they use. You can verify the claim somewhat by searching PubMed for the doctor’s name; a true pioneer will have multiple studies on the topic published in well-reputed medical journals. Whether or not the doctor is a pioneer may not matter to you; if it does, know that anyone can call themselves (or their doctor) a pioneer.
How much relief to you expect from this device? In the largest scale study that shows the most promise, 39% of patients reported either 50% fewer migraine days or a pain reduction of at least three points on a 1-10 scale. Is that enough for you? Is having your pain reduced from a daily level 8 to a daily level 5 worth the costs and risks of the procedure? What if you pain level stayed the same, but you had attacks 15 days a month instead of 30? Only you can answer these questions. (And after you answer them, tell your doctor what your expectations are and ask if they are realistic.)
Do the movement and activity restrictions matter to you? Think about the kind of activities you’d want to engage in if you felt better. Running? Horseback riding? SCUBA diving below 30 feet? Yoga? These all could potentially cause your leads to migrate, thus rendering the device less effective or ineffective. Maybe you’re so disabled right now that you don’t care about these restrictions. Or maybe you want to feel better so you can get back to the high-intensity exercise that you so love, but the stimulator won’t allow it.
Do you travel by airplane a lot? Does it matter to you that you will need to be patted down instead of going thorough a metal detector or being wanded? For some people, this is just a matter of requiring extra time at the airport, while others balk at being patted down by a stranger. It also comes with a lot of questions (and often commentary) from TSA agents.
Are you truly out of treatment options? Even if it feels like you’ve tried every medication, there are more than 100 potential migraine preventive drugs. Some people who don’t respond to individual drugs sometimes are helped by those same ones taken in combination with other medications. And that’s only medication, there’s also chiropractic and massage and acupuncture and dental appliances…. The list goes on and on!
Plenty of people have tried countless treatments and have serious medication side effects, so nerve stimulation may be the best choice for them. However, I’m alarmed that the patients in the studies I reviewed in Nerve Stimulation Research had tried a minimum of two preventives. Most had likely tried more, but that was the minimum inclusion criteria. How can not having success with two different medications (or medication classes) be sufficient proof that a surgical implant would be more effective than trying other drugs? Again, it’s a decision only you can make for yourself, but it’s important to know how vast the options truly are.
Can you afford the surgery? I justified my implant with the logic that I’d be able to go back to working full time and recoup the cost. Except that it didn’t work. I was out a lot of money and still unable to work.
Would you want to participate in a study if that were an option? The thought of getting a nerve stimulator at no cost is appealing, but what you actually get depends on the study. You might be given a fully functional, adjustable stimulator, or you could get a sham implant, one that’s preset to an ineffective level, or no stimulator at all. If you get one that’s non-functional or set ineffectively, it’s likely that it will be turned on and you will have full control over it after a specified time period, but, again, that depends on the study.
Whatever you decide, do everything you can to ensure that you are as well-informed as possible. It is a lot of work, especially if you are overwhelmed and exhausted by chronic migraine, but this is a major, expensive decision that should not be taken lightly.