Medtronic makes my particular stimulator, which consists of a battery box in my chest (below my collarbone, but above my breast) with leads (wires) that run up my neck and to the back of my head. When the stimulator is on, I feel a vibration in the back of my head.
The leads are prone to slipping out of place. If they do slip and are replaced, there is a chance that the device will no longer provide relief. Mine have slipped, but not enough for it to stop working. My docs said that they’ve learned that some slippage is normal and that fewer patients have had to have leads replaced than they thought would when they set out.
People with these stimulators are told to limit their activity to avoid stressing the leads. Things that can stress the leads include yoga, horseback riding, kayaking, swimming freestyle, massage. . . . I’ve had more trouble with activities that involve stretching my shoulders or chest rather than my neck. I’ve learned to modify most of the time, but I did push too far for a while. And sleeping on my stomach, the surefire way for me to fall asleep, is out of the question.
There is a battery that has to be changed every few years (the time period depends on individual settings) and the only way to change it is through surgery. I know of someone who had to have her battery changed after six months, but the estimated time is between two and five years. I run mine at a low setting – abnormally low, actually – so my battery is expected to last a long time. (Advanced Bionics makes a stimulator similar to mine that is rechargeable.)
I had a choice of two different battery boxes – one that was larger with a longer life and one that was smaller with, not surprisingly, a shorter life. For once in my life, practicality reigned and I chose the larger battery. It’s more visible, but I’d rather have that than lots of surgeries.
Pressure on the box causes some pain in my chest and happens more frequently than I expected. Children often bump into it when I’m playing with them, people hug me and squeeze too hard in the wrong place, and I hit it on the most random things (like door frames and boxes that I carry). Seatbelts, bra straps and bags carried on that shoulder are also irritating.
The Bion, a small, rechargeable and lead-less device made by Advanced Bionics, is also being tested right now. The area of stimulation is much smaller than with my stimulator and a primary question is if it covers enough area to be effective.
The pain section of Medtronic’s site describes the stimulator and how it affects a patient’s life. Headaches aren’t specifically covered, but the FAQs listed under other types of pain apply to this device; look for the questions about neurostimulation systems. The Advanced Bionics pain site isn’t as detailed, but has pictures of the stimulators with leads. Bion Application is the best place for basic information on the lead-less device.
wow all your info is a huge help!i have severe headaches all the time and am loseing my motion of my neck,and have alot of neck,shoulder pain,my doctor has tried alot of stuff with no luck and now there talking about this stimluator,i have 4 young kids and the pain i get has kept me from doing alot of stuff,i even lost my job.i guess my question is is the stimluator worth the loss of activities and restrictions(does it help the pain that much to deal with all the restrictions?)do you still have headaches?also if a lead comes off do you have surgery to to get it in?how long was recovery?im sorry for so many questions its just im going back and forth and havent found anyone yet who has it to be able to answer stuff
Can you tell me how you are personally doing with your stimulator? I have a dear friend who is refractory to almost all treatment and is barely functioning with daily severe intractable migraines. Any info you can share would be so appreciated.
Thank you
debbie
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I answered a lot of your questions in my response to Katy’s comment. The truth is that it does help, but I’m not sure how much.
K
Thank you for the information. I have been considering this as a treatment option and your information was very helpful. I thought this option would allow me more of a chance to live again but the restrictions are more than I bargained for. With small children I am afraid it would take out even more things I can’t do with them. At least with the pain, I sometimes have good days and I try to make up for the bad days. I don’t think I am willing to take the chance of never being able to do certain recreational activities. You never know though, I could decide it’s worth it tomorrow depending on the pain.