I am open to questions about the PNS or Pain pump. My PNS units all failed over the years for various reasons. I've had different manufactures for them. Medtronics being the most common. My pain pump is Medtronics and after 4 months it's working well except where the catheter moves in my spinal cord space and hurts at times. Well worth the discomfort for a 7 on the pain scale. The doc in CO at the University is only working on military personnel and is now down in Co Springs. The University won't touch PNS or SCS now and neither will that doc's old practice. They are parceling us out to other states for now. The rate of success isn't high enough to offset the cost they have said. I don't regret any of mine while they were working-they brought some relief for a few months each.

@Mark I have been on the sidelines most of the summer also with the dark side of things . I have been following here and there your update in the scs pain pump sub forum and keeping you in prayers. Thanks for the knowledge and point of view .

For BETH sorry made it personal .You are leaving out Tuesday for Cleveland for adjustments with settings/programs and if that isnt of help your then going for lead adjustment surgery. I will text you . Remember like I told you on the phone no running threw your yard and garden ... I have it in my pocket ya know that Hope thing

@Trainwreck where is your pump located ? you mentioned spine area, by your neck or base of skull? before I got my PNS they wanted to put pain pump tank into back of my skull but when they did the med threw iv bad reaction so went ahead with T-Rex . What made you decide to go with pain pump did they mention MCS ? I know a few that are candidate for that but they arent up for the whole idea . so can i ask when they left the unit implanted they took out the battery and left the rest???

I have a t.n. friend flying out from s.c. to co. this month to get her st.jude fixed. Was done at Duke University. She is not a member here but Kat on this thread here her doc and rep are going to be doing it. so much to pray for and send positive energy out to. That is what I will be doing . I will post again soon . I see and feel a busy crazy work week I am not ready for that is right on the other side of tonight. Leaving Good energy , low pain vibs and prayers to all
PEACE
BMW

The unit was left in dead battery, leads and all-the doctor is no longer working on non-military people so there is no one to remove it. If the battery case corrodes or leaks we will deal with it then. My pump is in my back hip the catheter is in my S3 with a long lead up to T6 so that is why I can feel it moving and tugging. I can also feel when they remove meds or add them via a long needle into the hip pump. The snail sludge med wasn't an option so I am on heavy doses of intrathecal dilaudid. I have had the MCS (failed) and I've had necrosis of the skin on both sides of my chest where all the other SCS and PNS units were placed. No skin left to make a pocket so they went with my hip. I also have spinal cord tumors which negated some of the ares for lead placement for the pump.

Did you get the pain pump for tn? I am new to this site and desperately seeking relief. I am wondering if anyone else has had the problem of feeling the docs have given up on them or shuffeled the issue on to someone else?

Yes, TN or TN-like issues. I have it on both sides and all three branches. I have been told by docs in Mayo and Oregon that they would not touch me with a 10 foot poll. So I completely understand the shuffle and dump by doctors. Try to find a pain management doc or a neurosurgeon who understands facial nerve pain. The pain pump is not usually prescribed for new diagnosis since they have to try the cheaper (meds )route. My unit came in just under 250 thousand. It's a no fuss unit that is filled every 90 days in my home.

Sister Warrior ,,you know me too well to have to apologize for getting too personal!!! you made me laugh with that one!
I had my PNS put in in January and have not had a better 7 months in the last decade. Yes,,now there is a problem,,don't know yet I see my Doc an the worlds greatest programmer tomorrow so we shall see what we shall see.
First,, am I pro using PNS units if you qualify,,,Hell yes., For too many people the minor issues far outweigh the problems.
Second, my Doc is at the forefront of trying to get FDA approval on these for TN patients.

To Trainwreck,,a couple of things,, first don't know what the military is looking at but being a military dependent in one form or another for 30 plus years doesn't mean they are making the wisest choice perhaps just the money choice,,,,because every study done shows that the highest rate of positive outcome in using PNS units is among TN patients.
Now that being said it is also at clinics that have great Docs and in house programmers who have been doing this as long as he has so you are no guinea pig with these folks,,,they've seen it all before you and because of the nature of the hospital ,, they talk among other Docs without concern of whose more inmporant ,,,only with the concern of the patient.

If you haven't been GO to the Cleveland Clinic,,no4 hosp in country and no 1 for heart problems......Now let's be clear I had been going to the no 7 hosp in country for all my treatment,,,clearly not a backwater jerk hospital....But I will say the difference is astounding...I don't care what you've heard about MAYO or any other facility,,,I went to MAYO with my mother and the focus is just different.

Everything Cleveland does is really for the comfort and better health of the patient,,,,I have had more surgeries than I can count on 3 hands,,,I am familiar with hospitals,,,Cleveland is different....Done.

I have COMPLETE faith in my doc and his staff,,he does just PNS units and in how many different places he can get good results,,,he does dozens of TN patients a WEEK,,,this is the go to guy.,
He is caring has a personality and is still a Neurosurgeon,,,,go figure!

Trainwreck,,,aI am so sorry that you have been through so much,,it sounds like you have some other issues besides TN and I hope you find relief,,,,,but depending on your circumstances you may be able to get Champus/Tricare to pick up the tab for a second opinion at Cleveland,,,Look into it, I just had a friend who got them to do it, by law they have to do a second opinion and because only so many places even work with what you have if you get a patient advocate that is willing to fight for you,, you might get them to do it,,,even if it's just to check out what they are doing now and if it's the best thing,,,,at least look into it.
Also,,I can see that the military would no longer either do these or pick up the tab for them. Look doing these is still not FDA approved so it makes sense and I'm sorry but no matter how good the Doc is if the programmer isn't BETTER it's not going to work.

It really is the support staff that makes or breaks the efficacy of this unit especially for TN patients. If they do not know how to make that unit dance across the floor,,their not good enough for TN patients.....
In my humble (stop laughing Tina) opinion if any hospital relies on the Rep from the company to program you,,,,you're screwed. They need to have full time on staff programmers that have been taught (and they will do it in Cleveland and they don't charge to train people!!) by the right people and then your numbers on success rates are going to go into an area that makes it worth keeping,,,,,

I've done my homework on this,,I read all the medical journals from all the big hospitals,,,,did you know until recently Stanford did the Motor Cortex but not the PNS,, why?? they didn't think their surgeons would be doing such a minor procedure,,,,,,
Ask that to the patient whose Doc put the lead in the wrong place and should have used 3 instead of 2,,,,,yeah it's beneath them,,,,,

My point is do your homework,,and look I get it a trip to Cleveland except for some great restaurants (which it hurts too much to eat at) is usually not in the budget,,,,but look into it at anyway possible....

The clinic is Neuro Restoration which makes me feel good to begin with,,and the pain mgmt guy I saw first who referred me over was in the OR when they did the final implant,,,,they want each other to know at this hospital,,,,it's kind of the attitude that knowledge is free so lets share it for the benefit of our patients,,,,,

Now,,,am I bolstering myself up,,sure,,ai just had the best 7months in a decade and now it's being taken away from me and I'm scared ********,,,, and I want that back,,I want to eat salad with no pain,,I want to smile with no pain and I want to say my name with no pain,,,,but you know what,,I have faith,,,,faith in my God, faith in the prayers being sent my way (warrior sisters) and I have faith in my medical team,,,that they are going to do EVERYTHING THEY CAN to fix this and get me home so eating salads and smiling will be my real life again,,,,,

If you can ,,go,, they are that good,,,private message me I will give out the MD's name if you are serious about going.....
let's put it this way,,I'm on medicare and I had approval for an experimental procedure in TWO WEEKS,,,,because it had his name on it and it said Cleveland Clinic,,,,that tells you their success rate with TN patients,,,,

If you can throw some prayers my way today,,,my nerves are going to need them,,,,Love to you all

OK back again,,,,saw my programmer and Doc yesterday,,,,here's the scoop

This is normal,,,,go figure. I spent an hour and an half trying to get something to work,,,and it's better but not great,,,,then did another hour after a break,,still not great...
but you can't get beat up like that forever,,,so I go back tomorrow and will have better info for my programmer and she will be able to come up with something that will be liveable for a while,,,,then I'll come back up later in October when I can plan this trip better and we will try again,,,just so long as I can eat and say my name without pain,, I'll take it,,,, then later on we'll go after the beast again,,,,

She is confidant that she'll get me a lot better than this but it will take time. For anyone who has gone through programming when in severe pain you know,,for those who don't after too long you can't tell what is hurting or making it better because it just hurts so damn much. So you have to take a break to let things simmer down and then try again,,,,it takes the patience of Job to try and figure out what is helping or hurting and how the combinations of programs work together as a group,,,,,not everyone can do that job,,, I am LUCKY to have her,,,,

I was so scared and holding it together well,,,,until,,,,,I was getting on the elevator and my Doc was getting off and I saw him and I LOST IT!!! I threw myself into his arms and sobbed " please, please help me" and he stood there in his beautiful clean suit as I cried all my makeup on to his collar,,,, and he stood there,,,,just holding me saying "it's ok,,it's ok,, we'll make it better,,I promise" over and over again until I stopped,,,,,,he didn't have to do that,,, his compassion made him do it,,,,,that's who he is,,,he's human,,,,,,

After that all during my xrays and all the waiting I couldn't stop crying,,,,ask BM (Tina),,, that aint' like this girl,,I'm tough,,,,but seeing him made me break down,,,kinda' funny..

I went in to start the programming and at one point he came in again to just see how I was,, he didn't need to,, he wanted to,,, and I started sobbing again,,, and he came over and held me,,,he didn't say anything he just knew I needed him,,,,trust me crying like that during your programming doesn't help but they both understood,,,,,

So he left and I put on my strong face again and got back to the process,,,,I asked Erica my programmer,,"is this normal??" and she (who is not the warm touchy feely kinda' person) ,,put her hand on my arm and looked me in the eye and said " yes this is normal,,,sometimes your brain stops registering the signal and we have to change it,,,you will be okay" and then I knew that every dollar we went into debt for me to go there and get this done was worth it,,,,,this is my life!!! what value does that hold??? to have been able to go to the best clinic for my disorder,,,I was o blessed,,,,

The hardest part to all this has been the fear,,,7 months of real life,,,eating salads,,,kissing my husband,,,talking without fear,,,, was all taken away and I was left believing that it would never be back,,,because of not knowing,,I let my imagination run away with me,,,I thought the worst,,,,,just knowing that this will happen again makes living through this time easier,,,,today I am recovering from getting beat up yesterday,,figuring out what programs are good and what need to be changed,,,and just decompressing,,,getting me head around the fact that I will be better (perhaps not great,,,this time) and this will happen again,,and again,,and again,,,and sometimes will be great and others won't,,,it's a tool not a cure,,,,I kinda' forgot that,,,,it won't always give me the same coverage,,,but will always help,,, and help enough to get my life back to as normal as anyone with such a severe case of TN/AD as I have,,,,,

I thank you all for your good thoughts and prayers (to whatever higher power you believe in) they helped just by knowing they were there,,,,

And now because I can never end anything on a positive note I have a question,,,,,where are all of you from the beginnings of this thread??? I don't know you but I spent some time reading last night,,,all those people in the early stages of this who needed help and got it,,who were there for each other??? where did you go?? I get it that not everyone got the help they deserved,,,,but did someone out there go through what I just did??? was there one person who knew,,,she'll be ok,, it just needs reprogramming or even it sounds like it just needs reprogramming,,,,,ANYONE????

Because I could have really used you,,your help and support ,,,your knowledge,,,I know these systems have changed ( but dear god they're not as old as Tina's and she's still hanging in here helping us),,,but isn't the basic idea the same?? I will now know to not let it get so bad,, to pay attention more to the changes and to see Erica sooner,, not let this kind of terrible pain happen again,,,I learned and I will pass this knowledge onto anyone I can so they know,, so they do not go through the terror I did,,,
dId you decide that once you got help or are still struggling that you no longer needed us?? what about those of us who still need you???
Your knowledge, your input, support, disagreement??? whatever,,,where did you all go,,, because I could have really used your help in facing this,,,,,,ok

I love you all even though I don't know many of you,,I thank you all and am grateful for your thoughts and prayers even though I may not have been aware of them,,,they helped,,,I will always be eternally grateful for God getting me to the Cleveland Clinic and even more grateful for my Doc and Erica the worlds greatest programmer,,,words can not say how grateful I am for the support of my family and that my Stim worked well enough so I could kick my son out to find his own life and not worry about mine,,,I am grateful for Ken and 30 years of not killing each other yet,,,,,and words can not express how grateful I am for Tina who got me through the initial Stim process and continues to bless me in ways she doesn't even know,,although her life right now has been full of pain she brings me nothing but joy,,I don't know how she does it,,, MY warrior sister,,,,,thanks to you all

so if you dont mind me asking . as I have a few t.n., a.d. people 2 are on this thread Cheryl and lastnerve. the latter had hers removed. all of them candidates for DBS or MCS none want to go that route. so if you had choice of MCS or pain pump do you think you would of had the pain pump if it was offered at that same time as your MCS ??? I remember hearing of you a long while ago and I am sorry for all the issues you have been battling . A True Warrior you are and I am glad you are here sharing and helping. sending positive good energy to everyone .
PEACE
BMW ( Tina )

Beth I hope today was better all around for you. You are right I know NOTHING about having programs, settings or rechargeable battery . but I do know that those you mentioned 3 arent doing well... one had pns removed is candidate for MCS but dose not want to do it . so they are stuck in the cage with only meds to try and fight the pain monster another has pns in one of the 2 leads works well the other not so much so they are just keeping it as is and not having it out to have a MCS. when they are on the flip side of the ugly. I am sure they will be posting again. sometimes members forget they posted and are in other forums or f.b. ... But they are out . and ya know honestly having one get their life back and not look back is the best freaking thing ever. and on that note You get rest get back regroup . we will be in touch.
PEACE
BMW

Me again,,,,sorry if I came across as harsh,,it was not intended,,just fearful,,,,
There are those of you who came before me and I WANT no perhaps NEED to know how you are even if it's not good...because everything I can learn about this help me,,,,the good and the bad....knowledge is power,, it helps with our fears and tells us the right questions to ask....

OK,,so here it is.after three very long programming sessions I have a group that helps but not as much as I would like,,,,
SO I will live with this for now. The pain is not gone but much reduced,,,, and I will have to accept that for now...even the amazing Erica could not find something that could cover it all...we agreed that trying to program me in short sessions is not the best ,,for me.

So I will go back again in October after this has had some time to work and see if in time it helps more,,,that seems to be,,,for me,,the best approach...there is just too much pain involved on trying to do it this way.....
when I go back I will plan it for over a week,,when she can work in shorter times,,,less pain for me and the ability to give her better responses,,,,after a while it's too hard to tell what is helping and what isn't,,,, so shorter session every other day over the course of a week and with some pain already reduced,,,she is certain we can do better,,,,

It helps having a programmer who understands that it hurts me more than it does her,,,,but who still BELIEVES she can do better,,,,she has not given up and said,,,oh well that's it,live with it,,,, she encourages me and understands that not everyone can be programmed the same way,,,,it is reassuring,,,, I respect and appreciate her for that,,,,

So I will plan for this next trip and she can plan me in rather than coming in on her day off just to try and help me,,,,she had things in her life that needed to be done but took the time to help me anyway,,,,these people care about me and helping me control this pain,,,,,she is looking ahead and does not want me to face the Holidays and the winter without better pain control....
and every visit my Doc has made time to stop in and see me to see how I'm doing and he is genuinely concerned that we did not do better this time,,,,but he too understands that you can't always get it right the first time,,,,,,

Perhaps that is why I am so convinced that this hospital and Doc is the place to go,,,,for us TN/AD patients,,,,they really care and don't give up,,,,they keep trying,,,keep believing that they can do better,,,,it makes you feel that you are not the only one fighting for you to get better,,,,as I was leaving,,it was clear he had other places to be as well,,but he was with me,,one patient among the many,,,,
He gave me a hug and said "don't give up,,we haven't,, we will get this better" that's what you need to hear from your Doc,,,,
He's really done with me,,,there's nothing left for him to do,,no surgeries,,then why did he make the time to be there??? because he cares,,,,,he REALLY cares,,,,
knowing that everyone is with you in this journey,,,calms the fears and gives you hope,,,,,
I thank God daily that I was lucky enough to get to THIS hospital with THESE people,,,

No I am not pain free or even as pain controlled as I would like but I know we are not done at this,,,,we are fighting this pain together and that takes that burden from my shoulders and puts it on OUR shoulders,,,,,that weight I can bear.....

So now I head home,,,better but not great,,but still better,,,and I will come back and fight this beast together with these people who care about me,,,, and that I can face with less fear,,,,in the end that's all I can ask for,,,,

My love and thanks to you all,,,For the prayers and "good low pain vibes",,,,,I will stay here with you through the good and the bad and hopefully my knowledge may help someone else make this difficult choice or perhaps I may help someone who feels like the medical system has passed them by,,,,get the courage to go where I did and maybe ind the hejp they need,,,,,,Good Luck to all of us,,,,,Beth