I can’t stop wondering if my nerve stimulator reduces my pain at all. In the first six months I had it, I had a three month period with no severe pain. Not one day, or even part of one day, was spent in bed because of a headache. I cling to that time as proof that the stimulator helps me, but the evidence hasn’t been strong since then.
Maybe I feel better because I’m not working a stressful job that I hate, nor am I depressed. I eat real food; even when I eat junk food it is made of simple, obvious ingredients (my favorite cookies contain flour, sugar, butter and real vanilla extract). I no longer have frou frou coffee drinks, which are full of artificial flavors and who knows what else, almost every day.
I’ve been fiddling with my stimulator the last two weeks. I’ll leave it on for a while then turn it off for the same length of time. It can be from a couple hours to a couple days. Or I’ll sleep with it on some nights and off other nights. No matter what I do, I don’t feel a difference. It’s tough to compare when my pain varies so much in a day, but I have felt no worse with it off than with it on.
It is not uncommon for a nerve stimulator to help someone at first, but then stop working. It’s as if the nerves outsmart the device so they can fall back into their normal (albeit dysfunctional) rhythm. Maybe this has happened to me. Or maybe I just want my body back.
It’s been almost a week, so it’s perfectly reasonable to call them back. They have to know that patients who are interested in stimulators _are_ desperate. I can’t image it would be a black mark on your psychological evaluation.
I had to have a psych eval too. It wasn’t a big deal at all. Honestly, I feel like I was perceived as less depressed than I was. I wonder if he was deceived by my brave face.
It sounds like the device that Swedish is using is the Bion. I’m not sure what size a TENS unit pad is, but the Bion is about the size of a (very) large vitamin.
If the leads are right next to the generator (aka battery), then migration isn’t an issue. Motion is an issue when the battery is farther from the back of your head. Basically, the further the leads go across your body, the more likely they are to be moved by the movement of your body.
There’s definitely more we can talk about. I’ll give you a call in the next couple days.
Kerrie
Hello.I am needing to talk to you about a couple of things.First,reading what you’ve said about your stimulater,it is pretty depressing.Because I am supposed to get one soon,and it is bothering me for a few reasons,the obvious one would be will it go the same for me,and that I really need something to work,etc,etc,and also because I went to speak to them about trying out the stimulator,and the biggy,which is when are they going to call me back.That’s really bothering me,and especially because she (the person at swedish med) said I was supposed to go thru a series of evaluations,with one of these being an appointment with a psychologist,to see if I have too fragile of a personality to be able to take it if it doesn’t work,so I’m afraid if I call and ask what’s taking so long,they will think I’m desparate(which I am).I called once last thursday,which was a week after I went up there,and got a voicemail,and did ask when it would be that I would get started,and no one called back,although it was late on thursday.
This is how it went:I got to the headache center and was taken to a room where i was asked to read a huge stack of papers about the whole process and then speak to a nurse prac,and decide whether or not to sign.After speaking to her,I asked a few questions,such as would the wires come loose like you said they did when you were knitting,and could I excercise,and she showed me a model of the implant.It hasn’t been approved for use yet (except for us guinea pigs)and the implant is about the size of tens unit sticky pad(lol)and the wires were only about 6 or 8 inches long,and weren’t really wires but like rubbery-plastic tubing,and she looked at it and didn’t note anything that looked like it would come loose,and stated she didn’t think excercise would be a problem.Again,this hasn’t yet even come out for the general public,and so hasn’t been really tested yet.
The whole idea went,that they would implant the device,move things around while I was awake to see if it felt like it changed anything,and if it did,then install it properly and turn it on,but not tell me how much it’s on and I leave and try it for a few months,and then come back and state how it’s working,and if it wasn’t turn it up more,and so on,and get my feedback on how it goes.All this in the span of about 4 years.
So everything sounds great and all,but I just wish they would call me back.And I don’t want to bug them.So I guess what I’m asking is,how was your whole experience with this part of the trial,and your overall experience compared to what mine sounds like.Since you live close,it might be a good thing to talk in person or on the phone.They said I would be coming in to see them quite frequently,and it’s about a 50 minute drive from here,but they said they would pay gas.(with these prices!)
Actually tho,I do visit Seattle a few times in the summer,when all the festivals happen,and stay with my sister during these times.She lives in White Center (I know)and loves it there but I’m not arguing.
I actually used to live in Ballard for awhile,and after that West Seattle until I moved all the way out here in Graham.Since I don’t work it isn’t really a problem,but I do wish my mom and dad would have moved a little closer to Seattle because now I have to drive so far to get to the Folk Life festival(you can probably walk there) and so on.
So anyway you can either just post back here,on your whole take on my situation,or email me at walksalone05@aol.com,or call me at 253-875-2829 and ask for Teresa.If you don’t want to spend the money for the call that’s ok I know it’s far.But either way I would definetly value your expertize on this subject.Thanx and I hope you’re having a good and pain-free day!
Wow, what a tough decision to make. Good luck in Phoenix… I’ll be thinking about you.
3 months strikes me as the typical time period I know for most people’s bodys to return to their normal (albeit dysfunctional) rhythm… That’s usually the time frame my medications crap out on me or levels need to be adjusted.
I’d ask your doctor if there is anything definitave you can do to test to see if it has stopped working.
You must be struggling so much with this decision. Just remember to make whatever is the right choice for you. And if your not sure, just listen to your gut and your heart, it won’t lead you wrong.
good luck!