ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: staypoz on January 21, 2011, 10:28:28 am
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Yesterday I had a permanent neurostimulator implanted to help with my head pain. It's done as an outpatient procedure at the hospital. As brp51d posted, it isn't the most pleasant procedure, but I went to work today with no ill effects except some bruising. A small battery was implanted above my chest and wires from it were placed underneath my skin running up my neck and across to my AN side. Because of the titanium plate, the battery and wires couldn't be implanted on my AN side directly. I have used the device intermittently since yesterday and will go back to the doctor's in about 10 days to have the device programmed further so I have more choices of the frequency, kind, and intensity of the sensations I feel. It was weird to recharge my implanted battery this morning, but I'll take weird over pain any day. While this isn't advertised as being able to take all the pain away, it should, if it works as well as it did during the trial, give me some relief.
Brainwrecks be gone!
staypozl
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Hope all works well for you....We will try anything we can to get rid of pain...We are relentless! ;D
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Staypoz ~
Congratulations on receiving your implanted stimulator. I hope it gives you the relief you've been seeking. My wife has a similar device (implanted stimulator) for the relief of spinal nerve pain. She received her's a year ago but has the 'permanent' model (no recharging, it'll be replaced when the battery dies). She says that it helps....giving her about a 65-70% decrease in nerve pain. That's worth it to her - as I know a similar decrease in pain would be to you. Please keep us in the loop on how it works for you. Thanks.
Jim
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Yes, we are relentless. I'm so happy for your decision and that everything is going along smoothly. Incredible that you were at work today. You are now officially a Bionic Woman! Waiting for your reports of being pain free or at least close to it.
Hugs,
Mei Mei
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So far, so good. This is the longest I have gone headache/head pain free since my surgery six and a half years ago.
Jim, I was really interested in reading about the kind of device your wife has. I'm finding the recharging and stuff a little cumbersome still, but I'm sure it will become second nature to me soon.
I'll continue to share what I hope will be progress with everyone.
staypoz
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It will become a routine very soon...like recharging a cellphone. This is great news about your being headache free after all this time.
Mei Mei
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This is an update on the neurostimulator experience. It's now been about a week since it was implanted. I am healing well and have had only one challenging day when I had to remind myself that healing isn't linear! You'd think I would have learned that lesson after the surgery to remove the AN.
Anyway, I still have not had to take any medications of any kind since the device was implanted. The last two nights I have actually slept with a pillow, as opposed to a wedge. When I feel I headache coming on, I just turn the stimulator on. It isn't able to help with the pain I sometimes experience in my forehead, and I knew that from the trial, but it is very good at masking the pain that starts at and radiates from the incision site.
I wish I had had this thing implanted years ago, but maybe I wouldn't have been deemed a good candidate since I hadn't exhausted all the other treatment options that I tried and that work for some other people.
I see the doctor next week and also the tech from the device company to reprogram the stimulator so that I have even more "stims" to choose from.
staypoz
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I'm so happy for you that you are finally on the way to pain free living. It's incredible that all you have to do is turn up the knob and it works.
You've come a long way to this healing. It's about time!
Mei Mei
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Mei Mei.
I hope you find the same relief surgically or otherwise!
staypoz
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Thanks, Staypoz. We're both working on it. It's a long road to the goal!
Got to stay on the straight and narrow!
Mei Mei
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Staypoz,
I read your recent posts with joy! I love hearing news of success in treating these horrible headaches and head pain. Next time I fly back to the other coast, I will give you a call. (I was back there last October.) Take care. I will check in from time to time, to see how you are doing.
Janet
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Hi, Janet. Please do be in touch if you come this way again and thanks for the support. It has been a long journey. Are you in Seattle? I may be going that way in the spring.
My hope is that eventually I will be able to have this thing explanted. From everything that I've heard from other headache sufferers, these headaches do eventually subside, but it might take years. I know that the frequency has subsided over the years and the intensity has varied, so I am hopeful.
Take good care of yourself.
staypoz
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Please let me know when you might be in Seattle in a private email. Maybe a dinner or lunch, if you have the time?
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Will do!
staypoz
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;D ;D ;D ;D So glad its working for you!
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Thanks, Cindy. I went to get the stitches removed yesterday and to have additional programs added. All is going well. I had one of my really bad headaches last night and the device helped mask the pain. Woo hoo!!
staypoz
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Just a quick update. The device continues to help me deal with the daily head pain. I had a brainwreck over the weekend and didn't feel it was as effective as it was during the trial, so I am going to have to have some more reprogramming of the stimulator done. I was told that it is not unusual to have that done several times soon after the device is permanently implanted. It merely involves sitting down with the rep from the device manufacturer as they program where the sensations will be directed and what you want them to feel like. Overall, still a positive experience.
staypoz
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Just a quick update on how the neurostimulator is working. I had my six-week post-implant checkup and have the go-ahead to resume all activities. The device is still doing an amazing job taming the daily head pain. It hasn't been as successful in addressing the brainwrecks and brainwreck-lites. I met with the programmer from the company that makes the thing and he came up with a program to use exclusively when one of those hits. The challenge is that it's hard to program the stimulation in a vaccuum. I can't tell the programmer that the stimulation is hitting where it's supposed to when I am not having one of those dreadful attacks.
I finally found something that can help me with the pain and I wish everyone else the same good luck in their search for relief.
staypoz
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Oh, my heart goes out to you. I am praying that you don't get those brain wrecks. I really feel for you. It's a horrible existence.
Hugs,
Mei Mei