Hi Lily,
first of all, I know how you feel about not wanting to tell the Doc. I would feel the same about my Doc. He put so much time in researching what was best for me, worried, etc. I am certain that he wanted it more than me. If you do not tell him, he would be crushed. You have to give him the chance to fix it. Having said that first......now let's look at the future from here.
Do not worry about " why" he put them in a different place. That is water under the bridge. Keep in mind. It is really easy for him to take them out and put them in a different place. The procedure is that easy. My Doc put all three of mine in a different place also. Why??? I do not know. He should have a cat scan that he took at the time of the trial. He would have had that up for him to use during the permanent. You have to call him asap, because if he is going to take them out he needs to get to it before you get too much scar tissue around them. Also, you will need to be without anything ( leads) for at least 1 month for your face to get back to it's normal state ( like before you had the trial). Then he can do it again. It is not the end of the world. Just a lousey inconvience to go through. That is the worst news. Now.......have you called the rep with the company to have him adjust anything? Are you using the manual setting so you can set the stimulation to what ever level you want? If not...start doing that. I do not use any of the programs that were set for me. None of them help me. I set my own levels. What is the name of your stimulator? How long has it been in? did it start not working right a way? How do you know for sure that he put them in a different place? Get with him right a way. Send me an email to answer my questions and then we can go from there. It is calewark@me.com. You can call me also. 303-722-1307. I have unlimited long distance so I can call you back.
Hang in there. There is a light at the end of the tunnel. And.....it is not the headlight staring at you!!!! Call me and we can talk.

You will be fine

Cheryl

You should be careful about posting your phone and personal info in such a public forum ... cus ya just never know. I want all my t.n. family to be safe .
Thanks for reaching out and helping.I love ya Cheryl. :hug:
PEACE
BMW

Tina, Cheryl,
Thank you, I really appreciate your advice. I finally got ahold of his nurse, and he is fitting me in next week, on Thursday. I would have taken the appointment for this morning, but I am having a pain spell that is lasting a good number of days. I went to my friends to hold their sweet babies and help them take care of the twins, and, well, it just got the pain started. We walked them in the wind, and I was looking down the entire time. I'm on day 4 now, hopefully next week will be better.
I am still a bit weepy and sad. I guess that's justifyable. And we have to get central heating in this house. These cold days are wreaking hell on me. Does anyone else respond that way, with these Fall days?
I am immensly grateful for your help and encouragement.
Hugs,
Lily

I HATE THE COLD!!!!
My steel plates on each side of lower jaw get cold so fast. I cover my face up use hot water bottle too.
you need to get you a scarf or in winter ..I am in Florida so it dose not get cold like the rest of usa but I wear like a face mask I slip it over my head down around my neck then pull the top part over my lower face. so my eyes are showing I look funny but it helps so much.
so warrior pal of mine I am sending strength and wish for better warmer weather to be with you while you await your apt. and ya best know I am so in your corner for the doc and the rep to work something out and get this stim and the leads working for you..even if it means having the one lead out and re strung to that good spot. keep your head up hang in there and heck yeah let yourself be weepy and sad let it out. we have all been there. in fact it has been you who let me unload about my friend and about my co worker . thanks for that and if I or anyone of us can help let us know.. you know how to find me and have my email and phone so do not think twice about writing or calling okay. cus ya know I will be calling you very soon :D
:hug:LOVE YA Lily.:hug:
PEACE
BMW...Tina

Dear Lily
 

It is so hard to reach out to those who are your caregivers and make mention that things are not just quite right, but if the placement of your leads is not according to the trial and the effect is not what you experienced in trial, then it just makes abundant sense to bring this to your team's attention sooner than later so if adjustment is possible, it can be made so. Misery is hard to handle, so hard, and you have my hugs too in keeping yourself cared for.

You do take care, Lily, and I will be praying for you,
Mark56:hug:

Well, I saw him (my NS) today, and he doesn't seem to think that it will be all that easy to move my lead, and begrudgingly agreed to do it, but he said that it will take a special tool made to do it, and, well if that doesn't work, then he'll just have to pull it and that is major and blah blah blah, and it just reduced me to tears. You guys, I've just been losing my 'brave' lately - you haven't known me for the last few years during all the other surgeries - I've had my chin up. And I just don't know now - it's getting harder and harder. I felt like he would rather have hurt my feelings than to swallow his neurosurgeon pride. So Once the floodgates opened I just couldn't stop and cried all the way home. So now my face is just screaming with pain. Ughhhh. And Dear sweet Tina, before you get on the phone to call and help me feel better, it will just make me cry more and then the pain will be even worse, so if you wouldn't mind, please give me a day to just distract myself and eat some ice cream and watch movies so that I get my mind off of this until I am in a better space. I love you honey, but I know that I can't afford to cry any more today.
I know that things will be better tomorrow, they always are after a day as crappy as today!
Love to all,
Lily

Now how did you know I was waiting till 7 my time to call you today?
:hug::hug:
by now I bet you have a few choice names you have called the PNS eh.
Luv ya back
I will have you in my prayers and my thoughts and will catch you next week with a phone call. TAKE CARE OF YOU!!
PEACE
BMW...Tina

p.s. one step at a time . we are here for you to hold you up and keep company.

Tina,
:hug:
Lily

just wanted to say hi
 

My last nerve - I just wanted to say I am so sorry for all the problems with your lead placement. keep at it though. you have come this far, know it has been hard, but get it right. No reason to stop at this point.
also wanted to let you know, I have had my stim for a month and even though it has been working well, I have been having quite a few weepy and sad days. I think it is just the culmination of the last few years and trying to get the pain fixed. it is kind of strange, I finally get the stim and start getting some relief and I get all sad and weepy.
part of my problem has been realizing I am never going to be fixed... I am starting to feel better emotionally. I am trying to just be grateful for what I have each day.
just wanted to know that I am here to support you and keep pushing until you get that lead fixed and have it working properly even though it is hard. I am rooting for you.
Lisa

Where to get PNS/SCS treatment on west coast
 

I am new to this forum but have seen many of you on the TNA web site forums. God bless you for posting and giving the rest of us some clues on how to find help- especially calewark and BMW who have pointed me to PNS/SCS. After four sinus surgeries before successful diagnosis of TN Type 2 at OHSU in 2006, 3 years of many meds including trileptal and Lyrica, SRS at UCLA in 2008 with zero success, MVD in L.A. in 2009 that cleared the original pain but created all new deafferention pain and started Fentanyl plus hydrocodone in 2010, I am searching for doctors who perform PNS/SCS. Found many doctors who do PNS/SCS on the Medtronic, Boston Scientific, etc. web sites but they all use it only below the neck (mainly spinal pain). My pain doctor is going to ask the Boston Scientific sales rep and I have sent questions to all the manufacturers web sites about doctors who use these devices for face pain. Now to the point, with the correct words in the search engine today, here is a new online TN diagnostic questionnaire from where I got my original diagnosis after MRI and physical examine by Dr. Kim Burchiel and Dr. Andrew Zecast at Oregon Health & Science University (OHSU). These doctors are the west coast leaders like Dr. Peter Janetta is an east coast leader in treating TN. And, he makes presentations and publishes at the TNA conferences.
I have not posted enough to allow inserting web site info but you can search on ohsu.edu then school of medicine then neurosurger or neurological conditions to find the online TN diagnostic questionnaire and info on PNS/SCS treatment. You have to submit the diagnostic questionaire to get excellent explanations of the types of TN and suggested treatments for each). Will post again if or as I find more doctors who perform PNS/SCS for face pain.