Beth02L,
I had PNS surgery on 11/29 final 12/6/2011 in Chicago, which was 5 hours away from home, it was done as outpatient and I also had to get hotels, but I was put completely asleep for the surgery, I hope whatever anthesia you have it will be successful-may I make a suggestion, my mind was so focused on the surgery and the recovery that I did not realize probably the most important thing about the PNS- your stimulator is only as good as the person who programs it-if you get the opportunity try and find out before your surgery who will take care of your adjustments to stimulator once you return home and take the time call them and discuss their availability, to meet with you their experience with stimuators, where you will meet, and how often they would expect to meet with you, In five weeks I have had "2"adjustments and needed probably 4 or 5 due to lack of being able to meet with a representative, while in Chicago had no problems but once I returned home, I to navigate who to work with my stimulator and where, which is NOT something you want to be dealing with after surgery, find out who is going to work with you once you return home-maybe meet with them ahead of time-and ask the rep you are working with after the surgery all the questions you have, so you can get to know them a bit.... hope this helps you avoid a few of the hiccups I have had to endure!
God Bless and best of luck

I have only 1 main lead wire as my TN was only in my lower jaw area, I did have stitches where the leads-on the 1 lead are 8 leads or paddles as I call them) were inserted, however where my battery was implanted was in my chest near my clavicle, this was put in place with surgical glue and paper stitches and did not have to be removed there, I did have stitches removed 2 weeks after surgery, and it was not painful at all, I expected it to be but it was very simple and quick, and a relief to get all the padding and tape off behind my ear and jaw and face. I also had good communication with my surgeons nurses and my surgeon prior to surgery but again you are like me and traveling and you will need a support circle once you are home-so again my suggestion as a patient not a doctor get your medical help situated that will help you once you are back home.( again I have a St Jude Stimulator so may vary if you get another type)

Thanks so much for the input, I never thought about who would be adjusting
the stimulator after I come home. Is it that difficult, if they show me can I do it myself? I guess I'm relating it to a TENS unit which I adjusted all the time,,,one
more question for his nurse tomorrow.
Thanks for the info on the stitches, I kinda' figured that I would have to go back
and have them removed, I guess it will just be a day trip up from Dayton where I
will be doing my recovery.

Once I get home I am assuming my pain mgmt Doc will continue to be the lead on
my controlling this. I am assuming that they do this type of procedure on backs
and necks, He is at Barnes Jewish Hosp. another major medical center, so hopefully I will be able to find someone to help me work with this unit, if not I wonder if the Rep will travel to help me out??!! In the end, I guess I'm hoping I can learn how to
manage my own adjustments...that is possible,,,right??? I mean in two years I'm
not going to need to have someone else adjust this thing,,,right??? that would be
a royal pain,,,oh well one issue at a time.

I have a suspicion that this Doc will want me as awake as I can manage, he wants to make sure he's got the right spot, so unless it's really obvious where
that nerve is (which is possible) he's going to want my input.

So,,,,so far what does it feel like??? has it helped reduce your pain??
I guess I'm a little concerned how it's going to feel. When I had my RF the
reason they did not kill off this nerve as well was because it is wound very
tightly with the nerve near my eye and I did not want to loose feeling in my eye,
(so many problems with doing that) so I guess there is the possibility that my
eye might feel different as well,,,,I did tell this Doc and although he clearly
understood me he didn't seem concerned about it. I guess it would be a small
trade off.
Do you notice a difference in feeling all the time or just when you would be
having an attack??? Can you take a shot at describing what the sensation feels
like??? I've read differing accounts and, as usual, they are all different. I'd
like to know that, if you can. And anything else you can think of,,,I think I'm like you in that I'm too close to the situation right now, just trying to focus and get through it, I can't even think of what else to ask them,,,,I'll let you know what
I find out tomorrow from his nurse,,,,almost ready to start counting the hours,,,

Thanks again both of you for the help and support,,,I think I'll stick around
after the procedure,,this seems like a nice forum,,,,,Beth

Yes, Beth you will adjust your own stimulator yourself, I will refer to what you will need help with as not adjustments but "programs" you need someone to set your different "programs" as you heal from surgery you will need your stimulator to do different things as your lead wires move around you will need different "programs", so your "programmer" continues to work with your leads to make sure they are giving you the pain relief you want, because you are doing the trial, you will work with a "programmer" (aka) rep who will set your programs to make sure you are getting relief in the right areas so they know whether or not you want the implant, so you will get familiar with all that, I meet with "programmer" rep locally at my neuro office as my pain doctor was a little further away from home, right now I have 13 different programs that "I" can adjust myself, however we are meeting again on Wed as I will probably need a little more "programing" as another week has passed, more healing and more scarring, so pick a doctors office that is close to home! if your pain doctor is close, I would have peferred that option mine was over an 1 hr drive away- so how does it feel--------
keep in mind mine is in my lower jaw, it feels like "heaven" when it brings my pain down to a 1 or 2!!! in the beginnning you do feel the vibration of the stimulator, and you feel it a little in your whole body but really quickly your body adjusts to it, by the time you go back for final you really dont notice anything except that your pain is gone, or at least a ton better than it was. Each "programmer" aka rep I have met with and I have met with 2 different programmers have told me we will probably be meeting for next 3 or 4 months to continue to work with programs ( that I have the ability to adjust) and the probaby meet every 6 months or less after that for next few years, so again if you can this week try and line out your person locally that will work with you, my surgeon said he would be willing to let someone else take out stitches to save me the trip back to Chicago but preferred to see me himself (kinda an ego thing I think they want to admire their work) LOL so I did make the trip back to get stitches out, that is also when you will get re-programmed for your stim. I am so glad you will stick around, I know speaking with my surgeon and other reps that it is a little trickier around the eye but also because it is sensitive you will know right away with stimulator if it works or not! I am 51 and this was my first ever surgery besides the birth of my daughter 21 years ago, so I think I was a big baby about it, not alot of people have had this done so I felt anxious for answers mostly, and was so grateful when I found this forum and everyone who contributes and prays and cares. So keep asking anything you want, or anything I wasnt clear on, you want to go into the surgery prepared mentally, positive thoughts, and calm thoughts will get you through- God Bless and let me know what I can do!

Are you planning to stay in Cleveland between trial and implant surgery, or do you plan to come home and then go back for final? I have some suggestions for you depending on what your plans are! Thinkiing of you and sending calm thoughts your way.

Well, made it to Cleveland safely and was managing the pain until I hit Cleveland and the weather had turned sour. Cold, windy and looking for snow....my luck.

Here's what I know after talking to the nurse. The unit is a medtronics and I think I will be able to follow up at home with a rep in st.louis. I am lucky to have some flexibility in my schedule. The test unit goes in on Thursday and we will most likely head to Dayton for the weekend, next week I can come back up whenever to have it reprogrammed. Next Thursday the permanent unit goes in and I will be staying at the hotel in the hospital for a few days in case I need any help or I need to see the rep. again. That's the tentative schedule,,we will see how it really goes!!! Getting any help over the weekend is difficult so that's why we are not staying up here the entire week, that and I don't really want to "live" in a hotel for two weeks!!

I have another question, how much hair did they shave off and exactly where? when they did the trial where exactly di they have the wires ? what exactly was implanted at that point and with the permanent unit can you feel any of the wires? Also, how do you know when you need to have it reprogrammed?? Does it stop working well ?

Well, I think that's it for now, I've probably forgotten to ask you something really important but what ever I'll figure it out over the next few days..... I'll let you know on Thursday or Friday how it went.
Thanks again for all your help and support, you really gave me great questions to ask and things to know ahead of time. you've been great Beth

well the night before surgery... I have you in my thoughts and praying for the pns to be most helpful in reducing the pain and for all aspects of both surgeries and healing also the programming to be smooth .
my T-Rex is medtronics
as far as where and how much hair each of us is different cus of where the leads will be. I know for Kathy she didnt have any shaven or cut off. I had a small tiny patch by my right ear. you could not tell at all cus of my long hair. you will most likely have your wire coming out and taped by your ear but I AM NOT sure . you really dont feel the wire all they are doing is putting the lead in your face by the nerve that is all that will be inside for your trail. the wire will come out by ear I am guessing and be taped to your head the connection battery unit will be outside it is a battery pack you will tote around the wire runs from that pack and connect to the leads where the tape is . once you have the final they put the battery and the wires under your skin. YOU WILL NOT feel or be able to see them. you may be able to see a small bump where the lead is depending on where it is placed. but after the final no wire should be exposed. LOL RIGHT KATHY
you will know it needs adjusting or programming because it will not help as it did a few days ago or it will be hard for you to program in a good setting so you meet with a rep and they adjust the programming most call it getting programmed. I do not have any of that new high tech options . I really hope very badly that your trial and final go really really good. PLEASE keep us posted and know there are a big bunch of us praying and wishing all this is sucessful for you Beth. yeah there is more folks on the side lines rooting for you then you think we are here for you . Have a very safe trip and successful outcome/ endings with both trial and the final implant surgery. God speed.
PEACE
BMW
p.s. TAKE LONG SHOWER You WILL NOT be able to wash hair and stuff so enjoy it one last time!!!!!!!!
BMW

So glad you mad e it to Cleveland, I remember getting to Chicago 5 hrs north for me and it was soooo cold, tomorrow you will get your trial, I so hope you get this message, relax, breathe, and you shouldnt be shaved anywhere tomorrow, I wasnt during trial, as everything is basically left outside your body to see if it works, things are different with the final implant and we will get you through that so just for now think about the trial, when I woke up from trial in the recovery room the St Jude Rep was beside my bed and started working on my programs, I had immediate relief once we got settings to my liking, so make sure you are getting relief where your pain is, so they can work on the leads to get you where you are happy, best advice is be patient as they program it, I got a little scared when they first starting adjusting it and it was so weird getting used to that feeling but once they found what I call my "happy" settings all was good! Will be thinking of you and saying prayers that this will be a success, ( not fun to carry the battery pack around for that week but the week goes fast) just take it one day at a time and we are here for you in anyway- I also posted my email in earlier post feel free to email anytime. Again we will all be praying and thinking of you.
Kathy

Well, I just spent 40 minutes writing everyone and letting you know that I'm doing fine and I feel really confidant about this Doc and the entire process so far,,made a few good jokes, mentioned the great hair stuff they brought back, it's like clean hair in a can...the whole bit and the hotel internet ate it.
Gone, vanished, lost in cyberspace. Anyway, I really am ok and I will write more tonight or tomorrow. Let's just say that I met with the Doc and he answered all my questions and then a few. I saw the unit, the rep will be there to set up a few programs to start. I can come back up whenever I need to if I need a new program next week. I have the arrangements made to meet with a rep when I get home through my pain mgmt office. It's all ready. I don't have huge hopes, if I can get 50% pain reduction I'm thrilled. This Doc is confidant of a good outcome so I'm hopeful but no guarantees.

Great job- and thanks for updating us- you sound prepared and ready and I am believing the surgeon wouldnt have said you were a good candidate if you werent soI cant wait to hear your great results, got a feeling you are going to be so excited with your new stim! You certainly have yourself prepared and sounding very positive, so proud of you so Good Luck-God speed to the surgeon, and the rep that will work on your stim-
Yours,
Kathy