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!!
e

Happy dance for Beth, Kathy and a couple on the sidelines
you all seem to be doing pretty well and step by step getting back into things. Getting your body and yourself used to the new addition. And it dose take time to get used to the PNS and the programs, settings . Unless it is causing a very bad killer pain I would leave it on at low level let body get used to it. and then adjust as pain calls for it. before ya know it you wont even know it is on till you mess with the programs and stuff. so I am very happy to hear that most of you are adapting and the PNS is helping make the pain more bareable.

I must say this again and again The PNS dose NOT cure T.N.

The PNS dose NOT make a person pain free.

It dose wonder to help control the pain , it dose amazing job letting one lower the meds and still be able to cope with the pain better .

So to Kathy one week and half weeks down . YES!!! So dang AWESOME !!!!! we must have a half way coffee chat. lol. Take it easy and take breaks. and EAT!!
I always have to remind most of you to eat. I even still call Cheryl . so Eat healthy, Take your vitamins , learn some relaxation methods . This will help when a flare up happens. so you can warrior threw it staying relaxed instead of tensing up and stressing out making more pain. yes this means you on the sidelines way up North in Yankee country

Beth you take it easy too dont go like a bat outta he double hockey sticks doing chores and errands . the PNS is for your face NOT your back. perhaps in the future . I know folks who have 2 units. and there is an awesome forum here at neurotalk for back and spine stims. so I got help if and when
I do want to thank you Beth for sharing the programming and setting stuff. I am at a loss as mine isnt that high tech type and mine is so old . I think the sharing from each of us is what makes this thread so good . Thank You for sharing
and lastly I have to echo in saying this is not going to help everyone that is why having a good neuro and pain doc is important . Usually this is a last option thing after ALL meds and other surgeries have been expended . Perhaps my "passion" and my wish for the last 10 years will happen and PNS will be approved by the gov for treatment of t.n (and other pains). then what will BMW do lol .

also to a good pal on the sidelines who is still having hard time getting good rep... I am sorry . I am right with you even in the pouring rain. I dont have a magic wand but I do care and am here no matter what . I have you in my prayers always.
I'm leaving low pain ,strength, protection and positive energy to my t.n. family here at neurotalk all the posters , the readers, and everyone one the sidelines.
PEACE
BMW

Amen sister..can't agree more with what you've said..it's not a cure,,just one more thing in the "tool box" to keep pain controlled and help have the quality of life we are all striving for.

Keep prayers going that we get FDA approval this year or early next, there are people on the front lines fighting for us to have this as an option...I thank them every day...

For those still fighting with problems ...we are here for you...if we can help we will...anytime
God Bless

Ok crowd leaving Sunday to take Footloose up to Chicago to see Kevin Bacon and get me some good programs!!!!!! Wish me luck!!!! Thinking of you all and sending well wishes, hugs and low pain to you all!!!!!!

Beth just reminding you to ... DO IT ! get that cam out and Do it.
There are plenty of t.n. people who would want to hear about PNS and your experience and thoughts. SO DO IT!!!! You WILL help others !!!!!!!!!!! It has been so cool as pie (avoiding cure word lol) getting to know you and talk on phone.
oh lord Yes it is a blessing to meet all the many t.n. peeps and get to talk with everyone who\trade numbers on phone .

Kathy hows foot lose? I need to THANK YOU from deep bottom of my heart for helping me help you know who. we talked on phone and she seems ready for a 2ed opinion plan. I want to phone chat with you so will be calling sometime this weekend.

and Cheryl I cant catch you this week so far but I just sang Happy Birthday to you on phone so listen to your message. enjoy time out with family and may the good days keep rolling over you..low pain low pain . birthday hugs to you. .. and in our game of phone tag... You Are It... play again tomorrow.
off to get me some birthday cake as it is my hubs birthday today also
everyone have a wonderful weekend.
PEACE
BMW

Kwebster and you know who on the side lines ... I have had you both on my mind all weekend and all day today. both of you are at the same place different times but... May you both be blessed with positive programming sessions. yes you Kathy but you know who needs a second chance and dire need of a good rep and programs.. my positive thoughts and prayers have been sailing out in over drive.
everyone else seems to be doing well and it seems to have slowed down for me as far as new contacts getting PNS. those who read here please know I read in here every day even when I am not posting or replying... I am here .. to help anyone as best I can.. we can I should say there are a few of us
Beth thanks for the chat I enjoy our talks and am very happy the PNS has helped lift you outta that dark lonely hole a little bit. one day at a time.. you still have a bad back easy on that... it will sell and soon you will be where you wish. for now sister ...one day at a time.. yes burntmarshmalow.. cus once my face and lip felt like a burning marshmallow it made me angry hard on the outside like the burnt cursty outside of marshmallow on fire but on the inside.. still sweet little ol me . LOL
Leaving low pain wishes , strength , protection and endless positive energy to my family here in this forum , the readers and those on the side lines.
PEACE
BMW

Happy Birthday Kwebster

Its Beth's turn ... Happy Birthday Beth

I was adamant when I sat down to read these replies, that I was going to read them all. Alas, meds for atypical TN pretty much denied me that right for now.
To recap about me: I had my MVD Sept.28, 2011 for right sided TN. At my earlier appointment on Sept. 8, 2011 the regular surgeon was running behind and I had seen a resident. The resident told me I had typical TN and was about to just schedule me for the MVD when we caught the surgeon in the hallway. We all went into a different room and the surgeon assumed I had typical TN as well and scheduled all the pre-op testing and surgery date.

Come the morning of my surgery, and having had already been hooked to my IV's, the surgeon asked me what my symptoms were. I told him "the same as they were just weeks ago when I seen the resident." The surgeon looked at me as though I had grown ten heads and said "that isn't typical, that is atypical and I don't know if I can cure you now." I knew NOTHING of the risks. Although I signed a consent as we all did, my surgeon stated over and over that an MVD ONLY caused hearing loss on the side performed, and perhaps some facial numbness that WILL go away. I believed him. He even told me to not worry about what was on the consent form, as it was "the same consent wording even used for anesthesia, etc."

I went through with the surgery when the surgeon told me that if I did not have it done, one day I would have an atypical attack and it wouldn't leave. Further, he said that I would be stuck like that and he would not be able to help me.

Although I had complications ( stroke) from the MVD, I was fine pain wise, albeit numb, until November when things got out of hand. At the very end of November, I began complaining that my MOUTH hurt. The pain dissolved and I made it clear through almost the end of December with no pain. I still had numbness. Come the third week of December, the tip of my tongue had gone numb with pain, the inside of my right cheek, right bottom teeth, right gums, right palate... all numb with pain.

To make a long story even shorter, I experienced all sorts of different sensations at the same time enough that I can describe it this way: It feels like I was just punched in the mouth 20 times, sent to a dentist for busted teeth who injected me 20 times with novacaine, and somewhere along the course of the ride home, I decided eating fire ants for lunch would be a great idea. Oh, and I'm pretty sure my lower lip is hoisting around a bowling ball at various times.

Since December, I have been numb with pain. By February, in a last ditch effort to NOT end my life, I went to a pain clinic. Let me just say that I love my pain doc, but he is generally an idiot when it comes to TN and it shows. He had loaded me up with enough medication that I have finally begun throwing up due to them. I can no longer tolerate the side effects, and to add insult to misery- they really don't work.

The numbness HAS gotten better. The numbness used to be that falling asleep/waking up sensation you get in perhaps an arm after you have slept on it. However, what was numb just now feels kind of dead. My pain DOES wax and wane, as well as the numbness. Because of this, my pain doc feels assured that this is not AD but yet "one big trigeminal attack" or an overstretch injury given during surgery. "ONE BIG TRIGEMINAL ATTACK" my rear end!!! This pain is FAR, far, far worse than my ATN could have ever even though about becoming. I would LOVE to have my ATN back if it would rid me of this constant waxing and waning mouth pain.

Now, I have heard from others that if it is AD, it does NOT wax and wane. Does it? I'm conflicted and don't know what to think there.

In any event, I ended up numb with pain. That pretty much fits the bill of AD right there and as we all know, that bill just keeps growing.

There are days that I can just skim by without much pain at all. Usually, after I eat, I am just all sorts of doomed. Keep in mind though that there ARE parts of mouth that are still waking up. Just as far as a month and a half ago, my teeth finally woke up. I can now feel gum when I chew, but chewing hurts. The irony...

I am not a year post surgery. That is coming up sooner. This pain has colored my world, my sons world, and my amazing boyfriend's world. I don't know how I would have held on without him.

The last past few days, I have had that same old relentless constant pain. I could have chewed my entire bottle of oxy, and I am pretty sure I would still be in pain. To add to that, I am taking 2400 mg of neurontin, 20 of baclofen, 100 of zoloft, and 10 mg of oxy every six hours. I apply countless herbs, do mirror therapy, occassionally chew on a chewing ring ( dont giggle) and do everything imaginable to rid my pain to no avail. I actually look forward to sleeping, just because I know that i won't have pain when I sleep and that when I wake... the pain won't be there hardly at all. ( it increases during the pain).

To top it all off, I now get shoots of nerve pain and shocks of nerve pain along my lower jaw and up into my teeth. I don't know if that is low grade TN starting out again or my nerves saying they are REALLY really trying.

I have pernicous anemia and take b12 shots. That REALLY does help. They also just found me to be Vitamin D deficient and I recently began taking those as well.

What would you all do? Look into the PENS NOW or give yourself more time to heal. And please be honest with me: have you ever heard anyone who had an MVD, felt fine at first, then developed symptoms only for it to NOT be AD?

I want my life back. I want my sons life back. I want my boyfriends/to be husbands life back. I want OUR life back.

My 7th facial nerve got paralyzed during surgery and my physical therapist decided to use direct current facial stim on me at my docs request. THAT was the first thing that REALLY really worked for me. Just one stim session for 15 minutes can get me out of pain for 4 days.

Did anyone ever hear of "One big TN attack???" Really now? For months on end with no relief at all?

I/We are at our witts end.
Any opionions and/or help would be so appreciated!
Audarah

Hello Audarah . A.D. is numb dead feeling along with pain . I am not agreeing either that its one really really long t.n. attack for months and months. I would have switched pain doc a long time ago. pain specialist are a notch up and I have found for me mine did the best of all my docs..

you asked... have you ever heard anyone who had an MVD, felt fine at first, then developed symptoms only for it to NOT be AD?
I know of plenty who had mvd that were fine at first and then have pain return to some extent. they have had 2ed MVD and some fine. and then some end up with a.d.
I would research for good Neuro doc if there is one close to you. I am not sure what part of country. but confidante one of us can probably get you in the right direction on info. .
please keep posting any questions You have . that's what we are here for. Stay positive > Do not rush into anything > Do your research >
PEACE
BMW