Hi Cheryl,
Nice to meet you! I did read your story. I get the eye pain too - it is so aggravating! I understand that you are still battling your pain, until they put the final implant in you - I'm so sorry to hear that! I am glad that the day is getting ever closer, so that you can get some sweet relief!
Thank you for posting the pictures - they are not embarrassing, they are helpful! To those of us who are getting one, they are really helpful!
You all have given me hope that this may actually work. If I need some advice, I just might take you up on the phone call - I have so much to do before Friday - half my day tomorrow is all pre-surg stuff. They are admitting me just long enough to park me somewhere until they can come in and show me how it works.
Thanks again for your friendly greeting! I feel like I am making many new friends
Mylastnerve / Lily

okay tomorrow makes one day before the trial. also it is your pre op apt... so sister ya better get a good meal and good night of rest. and YES YOU WILL be back home Friday night!! things to help ease after surgery like we spoke of sleep in more up right position so as not to roll around ..less chance of tug on wires. dont do lots of cleaning or garden stuff dusting or anything that may dirty the area where the leads will be keep chance of infection down...No washing hair keep area dry and covered..and take it easy bending and twisting .dont rub or pick at area of incisions... and FOLLOW doctors and reps instruction. eat healthy get your rest and take your meds/vitamins if you normally take any vit C and B cant hurt.
No You CANT wash your hair be a big girl and just suck it up okay !! its not forever after this is all done you can go to salon and treat yourself.
sending positive energy and all the best of the best for you on tomorrows apt and for Friday . I know ya just want Fri to be over with your so close now .ALL of us are cheering you on and rooting for this to be very very successful.
night. I will be in touch soon
PEACE
BMW

p.s. a Bestie name humm like Bruno or Spike ha this will be fun...I like those kinds of names hence T-REX

ONE
We are about to have ignition . The day is about to arrive . Dont not worry if it takes you a day to feel the affects. everyone is different some feel the relief right away as soon as its on and others it takes a day or 2 . It is okay if your not all positive as I know all you have been threw so dang much but do not let negative wash over you okay just be in a holding attitude ..cus We have hope for you We have positive thoughts and We are here for you cheering you on.
Oh such Hope and a great feeling this is going to help lessen some of your pain. I am/ we are sending out tons of positive thoughts to/ for you.. I am praying in my own way to the higher powers that be . May your surgery... (funny to call it that coz the trial its more like a procedure then a surgery)

May your surgery go smoothly tomorrow and the trail of PNS be very very successful resulting in approval for a successful final implant and everlasting stim power to manage the pain and have your life back.
Lastnerve/Lily... I mean hope and wish this from my heart and soul

when you feel up to it you know I am going to be wanting waiting to hear from you so maybe on Sunday sometime you email me and I could post a short update if you want if you feel up to a short message to me .
I would call but I think early next week would be better for that..as I want you to take things easy !! Rest and recoup the first couple days.
Mmkay .
I will be thinking of you allll day tomorrow with the best of thoughts ,blessings and good things being sent for and to you.
I am crawling in your bag right now ..I am going to be there with you tomorrow right there next to you..in spirit ..in thought right there with you .
PEACE
BMW & T-Rex

Thanks sweet BMW for all of your positive thoughts and energy. I will take them all with me tomorrow, from every last one of you, my family, and my friends. The hubs will be there to remember for me - which is a good thing with my sieve-like mind
The rep will be there - they are using a Boston Scientific unit. My NS is happy to give me his number, teehee. He's got enough on his plate.
So I guess I am ready to roll, with you all by my side. Let's hope this durned thing works!
MLN/Lily

Last Nerve/Lily!! We are going to be cousins? Boston Sci, so cool!! I am so happy with my unit, now a week into use of the programs. How could I be any happier with this stim which has removed my nerve pain? I am so THRILLED for your rapidly approaching Trial!!

Tonight, and tomorrow I pray that your Trial be properly commenced, that no infection be anywhere near, that all whose work is your safety and health be rested and ready to do your serious work well and appropriately, that your Trial have all of the best attention so your work to try this device so new to your body and to your pain situation will be without any difficulty so you may know FOR SURE the stim is the solution you sought. OH how I pray that your Trial give you sure, certain, immediate RELIEF from your prison of pain as it gave me last May on the OR table the MOMENT the electrical charges first touched my nerves!!

Praying for you my friend,
All of the VERY BEST,
Rest well,
Mark56 PJ

Lily ....Many positive things to you..as we taxi down the runway... we are with you as are our best wishes and prayers.
WE HAVE TONS OF HOPE THAT THIS IS GOING TO HELP !!!!!!

lily
hang in there girl. You will love the stimulator like i did. Just be careful when brushing your hair. Those leads look like tiny pieces of hair and that can hurt. That is about the worst pain you will feel in the whole process. Good luck and we will be waiting for your post when you get home.
Cheryl

Hi Everyone,
Thank you for the prayers and well wishes! I can tell that there are still some drugs coursing through me - my typing is a mess!
Well, I just had the thing on for a little while, but it was feeling like bee stings, and I was getting nauseous, so I turned it off. Maybe a bit too soon to try it yet. I just talked to BMW (god bless you, sweetheart!), and she confirmed that it might be too soon - kinda like poking a needle in an open cut, so I turned it off for now.
The surgery was kinda strange, they woke me up half way through, and I was still drugged, and they asked me to describe things, and he wouldn't let me use my hands to point, so it was so hard to explain! The first try on the cheek was a bit too high, so they put me back under and repositioned it lower. It had made my eyelids spasm shut.
So now I am taking a break and writing this. Gotta rest and let myself heal.
BTW, he told me that he wouldn't shave my hair, but sure enough, he plowed a trail up over my ear, the %&*$#! (Just joking, of course I love my NS - who pursues a course of successful treatment as doggedly as I do).
I promise to keep updating as things go.
Thank you again for all of the well-wishes - you all are so special to me!
Mylstnerve/Lily

Hi Lily- So glad you are back from the surgery, even though it seemed strange and they shaved some of your hair! Wow! Sorry they had to do that. Yes, it is strange being awake in the OR and having them manipulate things inside you to ask "So darlin', how is that??" I admit being unready for the poke I felt as they inserted the needles for the Trial leads to pass, and I jerked on the table in the OR! Unpleasant for sure!

One thing of which I want to remind you as you begin to experiment with your Boston Sci remote is that once you establish a connection by holding down on the P button, you should be in your base program which in the OR your rep will have set up as the program you told them you wanted to have for starters. The programs are identified numerically, whether 1, 2,3, or 4. I was told they generally give four programs to the patient for this Trial experimentation week depending upon your responses in the OR. Your electric signal range should be set to the low side as you access a program. If you are experiencing the "Bee Sting" phenomenon, then you may be receiving TOO MUCH charge. Using the Down Arrow, you can click your signal to a lower and lower setting, all of the way to the minimum if you want to give that a try when you are ready. You may be one who requires less of a charge to thwart your pain signals from the nerves. Going low, very low, and working up with the Up Arrow, you may learn exactly where your tolerance lies.

This Trial week is all about experimenting, logging your results, and learning whether the stim device is a means and the proper means to better manage your pain. It is definitely not intended to heighten your pain experience. Definitely not.

I write about these thoughts since both being Boston Sci recipients, we should each be looking at the same remote control device. Hopefully, these thoughts may be of benefit once you begin again to experiment with your stim unit.

Best of luck! My hopes and prayers are definitely with you Lily,
Here if you need me for anything, anything at all,
Mark56 PJ

ahh things sound good, normal .do like we spoke of and write down everything... the bee sting feeling ,the nauseous. any worries concerns everything and bring the list with you tomorrow when you meet with the rep. be as detailed as you can possibly be. He will be tweaking/ playing with the programs and will be able to lower or higher the stimulation to the different leads to make it "work" better / make the stim more in tune with your pains.
yes being that you just had leads stuck into your face you need to let the face calm down a bit as it is like having a cut and something poking at it so let it calm down ... try it again later tonight play with the settings a little bit and write down what you feel as you do that. If your eye lids spasm you feel nauseous etc This is very very important you need to do this so the rep can tweak/ work with the perimeters of the stim and hone in on the settings .
the good thing is you can feel it and thats a very good sign that everything is leading in the right direction (pun intended ). once the rep works with you and tweaking the stim a bit more ahh sister I can almost bet in a few days you will be happy you are trying this! now get off the comp and rest ... BTW your hub sounds like such a angel !! you are more then lucky to have him ! I did not want him to bother you I just wanted to ask how you were but then you took the phone lol. but now my dear... eat rest a bit and turn it on in a little while just for a few mins play with it and WRITE DOWN how it feels describe it as best you can for each area. this is very very important okay lily
Your doing just great !!
healing hugs , positive energy and successful ending with this trail for you!!!
PEACE
BMW