Join Date: Dec 2007
WOOHOO!!! Don't have to do the additional procedure,,thank god for an amazing Doc and an,,,,you know what I don't have an adjective good enough for my programmer,,,,except maybe ,,life saver.
I went in and clearly doing the procedure to move the lead was last option,,for me too, I didn't want to have to go through all that again unless we had no other choice. So I went into my programmer in a fair amount of pain so we could get a good reading.
If I start talking too technical somebody shout back at me but for those of you who are lucky enough to be in a position of seeing a Neuro that has done MANY of these and feels that you are a candidate I want to keep you updated so you can better understand the process.
First, your stimulator has "groups" and each group has different "programs". Each program can do many different things, I can't honestly say I know how many programs can be in one group but so far I have 4 programs in 2 of my 3 groups.
Second, if programmed properly you will have enough groups to move back and forth with to handle how your pain is under different circumstances but not so many groups or programs that it becomes almost too hard to decide is this really working.
Third, it takes time, some people know immediately if the program is right more people like me need time to play with the intensity, live with it in your daily life before they know which one is best and at what levels.
Fourth, remember that if you move it around too much you may be shooting yourself in the foot. Directly after my final implant I was given a program that I thought was ok and was willing to give it at try,,,I found that as I let it work it was covering a larger area then in the beginning and was giving me much better pain coverage than I though it was. I had a problem with one "lead" or wire that is implanted being too close to the skin and I was focusing so much on what wasn't working I really forgot to look at what was working,,and it was a lot more than I thought..This is an electrical stimulation,,it's going to cover more space over time if you don't mess around with it. Sometimes you have to be willing to give it some time don't expect miracles,,it will be for some people but it wasn't a miraculous fix for me,,,,but now 3 months into this I can see how much of a miracle it is because I was willing to be patient.
That being said, here's what happened, I went to the Cleveland Clinic and I encourage you that if at all possible ,,go there. One, the Doc's are great, compassionate and do these all the time, it's almost a routine deal for them, ( remember don't be a guinea pig, go somewhere that does lots of these it's worth the investment in your health and in less problems in the future!!). Two, they have two programmers that are hands down the best. Like it or not, even if the Doc is great if you don't have a great programmer, you end up with worthless hardware. Lastly, they try everything.
I went in yesterday because the lower lead was not doing a good enough job of pain control and when I turned up the stim to really get some coverage I ended up with a small bump near my mouth, the tip of the lower lead, if I left it on high too long the bump actually would get warm,,,not a good thing.
So I begged some airline mileage from a friend who had offered and came back out. I left yesterday with a new "group" and the lower lead actually had two programs on the one lead, She took two diodes that were next to each other and made one program to try and drive the pulse deeper into my jaw, which is a constant pain. Then she took the entire lead and made another program that made the pulse go around the whole thing, so I would get the intensity in one spot and then the entire jaw next but it happens so fast it feels like it's at the same time..I really thought I liked it and left with a follow up the next day (today)...
Well,,,it really didn't work, I found at dinner or while talking I was having incredibly severe and annoying muscle spasms to the point where I had to turn down the intensity during dinner,,in a really nice restaurant,,annoying to say the least. But I could still see the value in the program, so I was willing to go home with my original group and this new group and give it some time at lower intensity's to see if over a few weeks it might work into something viable.
Brilliant programmer looks at me and says,,wait you have two spots that give you the most pain, both are very difficult to hit,,,can you live with the pain in the rest of your face and let's just focus on those two spots?? I'm game. 15 minutes later I have another group that is pulling everything into just those two spots, so no more spasms but better pain control in my lower jaw, still using the two programs on one lead but upping the intensity because the other two leads are now focused on one spot, the area in the roof of my mouth, my canine tooth and the gum, the side of my nose,,,,that's a really difficult spot to hit because you can't get a lead as close as you want,,,just because of anatomy.
I now have it, the best group yet,,I can live with the discomfort in my face if those two areas are causing less pain and in time that kind of numbing will spread out a bit and will give some more relief in other areas,,that's what I learned from my first group,,it doesn't just stay right here,,it does kind of migrate around where the pulsation is in the lead....I really hope I'm making sense because it is really technical and I'm trying to use normal words to describe it....
and please remember I'm giving you my experience,,everyone senses it differently, feels it differently and can deal with it differently.
So now I head home with real help,,just because I have this implant doesn't change how TN effects me,,the weather changes, no sleep, too much stress, poor diet, forgot my supplements anything that effected it before will still effect it but now I have three different ways to approach the pain...small and focused, focused with a broader spectrum and my original group except with the last diode turned off so as not to aggravate that bump....
I have hope,,I spent the day doing a little sight seeing, I walked down to some "great" lake which I should know and yes I had to hold my hand over my face because of the strong winds,,,I still did it and with little additional pain,,,,,damned amazing....
For me this has changed my life. I have cut one dose of meds from 4 times a day to 3 and am still cutting back on the amount at each dose,,,I am driving again,,independence,,,thank God. People are constantly saying, you are yourself again,,,,,well that's what less pain will do!!!
No, this is not yet FDA approved but again, hopefully this year or early next is what we have heard. That means that there are not a lot of places you can go and get this done reliably,,,Cleveland, I've heard Chicago and Denver....I know some other people have had problems with their units and programming,,,I'm lucky. I have a Medtronic unit and am lucky to have amazing programmers. Yes, it's difficult I live in St.Louis so this has cost me a bundle, but no question this has paid off beyond numbers....I'm getting back to being myself, getting my life again...worth every damn dime,,,
If you have questions, feel free to contact me. I'm lucky to have had wonderful results,,not everyone does but it is becoming another option for TN patients, another resource to help with a devastating disorder. That's great, it gives us hope that maybe more things will come in the future....
To BM thanks for all the support and good karma you pushed my way,,it was appreciated and it helped, I'll be heading home with enough in my arsenal of groups to be able to manage. I am so grateful for your help, support and always being there for me,, I love you for being my rock through this, you're great!!