Yes Ma'am...
Clearly posted and will call them today.
Thanks for the kick in the butt.
Lily

Hi friends,
I haven't been writing much lately becuase I have been isolating and not talking about things, in order to not have to think about them. Tina called me, and kinda made me take a second look at it, and recommended that I talk to you all.
When my NS put the leads in for the permanent PNS, he put them in a different place than the trial. I don't know why. But because of this, the thing that was working, the effect that I was most happy with - the ability to stop the pain in my nose and to wear glasses without extreme discomfort, no longer works. Furthermore, the stim only seems to interrupt the lightest pain. It only irritates the moderate to severe pain. And the lower one makes my teeth buzz really uncomfortably. I am still trying to work with it to see how I can best optimize what I do have from it, and to try different things in the hope that things will change.
And silly me, I keep thinking about my NS's feelings instead of my own. Like I don't want to let him down. Silly, Right? I think it is so I don't have to focus on my own difficult feelings. So Tina finally pushed me to call them and request a post-op, becuase they never set one up. I am on the process of doing that.
I have gone through all of the things that I have gone through with a fairly stiff upper lip, but I am cracking a bit lately. I sat and just cried last night - I'm tired of trying, you know? I've been through so many surgeries. And nothing has worked. And I am afraid that my medical team is just going to abandone me as hopeless. This is just the fear talking, I think. I have to get back in there and talk to him, and ask him why he changed it so much. Maybe with all the complex stuff he just forgot where it had been, but I told him I would put a dot where the lower one terminated beside my nose, and he went a full 3/8" lower than that dot.
So anyway, this is my story to date, and as you can tell, I am pretty morose. And I don't like to complain when I am in this kind of mood, because I was raised to buck it up and not to. So this is all very hard for me to say, and it embarrasses me to do so.
Any advice would be greatly appreciated.
Thanks all,
Lily

lily,
yes I do think just what I said to you on phone.
look at it like this for the trial that lead was in great spot. doc may have a reason he moved the position for the final perhaps doc was trying to plan ahead for if things got worse , if the pain spread out so possible he put lead further down or lower. but that is neither here nor there sister. you have tried it the way it has been placed in the final implant for a good few weeks now. you have tried to work with the programs and all the while sucking it up , toughing it out. damn woman you are a warrior in my honest opinion.
and now yes I truly think it is time,, past time , it is over due that you have follow up and a meeting with doc. trust me NO ONE is going to think you are hopeless or complaining!!! first off the doc dose not want to have his work ...his work being you and his first pns he DOSE NOT want this to fail he dose not want this to not be helping you or not work. he wants success as much as you.
YES sister I know of plenty of others who have had the leads adjusted, b.s. yes they take the lead out and restring it for better position yup it is bs but sometimes that needs to be done. if you visit the scs sub forum here at neurotalk you will find others who have had their leads adjusted. as fars as PNS which is different cus it is for the face, head. I can point you to at least 3 others who have had to have the whole stim leads and battery out then put back in later on and all are doing great now. you would probably only need one lead adjusted.
now the longer you wait to bring up this issue the more scar tissue is growing in those areas the more scar tissue the more secure the lead becomes. so the best thing to do is bring these things up and do not fear the doc or med team is going to consider you hopeless and give up on you. trust me they want a good ending just as much as you do . please do not sit there in limbo stuck as you are... bring this up and by doing so you will be making thing move in some type of direction that will lead to getting these issues taken care of . Lily talking about this stuff ..YOU ARE NOT complaining NOT AT ALL. You ARE stating facts, talking truths, being real, showing honesty. and damn it I for one respect admire and find strength by you doing that sister I really do. I am so proud to have met and gotten to know you. I am sorry this isnt doing like it should be doing but it is what it is and I will be here with you step by step no matter which way things go but please do not just sit there with a stiff lip and be stuck okay . cus that my dear sis kinda makes you well it makes you something I KNOW YOU ARE NOT!!!!
I am gonna get a couple others and have them reply cus Lily your NOT alone and I know the worst thing is just doing nothing.
sending healing hugs and positive energy and my prayers to you and yours.
oh yes and thank you for sharing that is what this place is for. true it may have you feeling embarrassed and a hard thing to do but letting it out is healthy and wise and the right thing, a good thing. it really is.
hang in there and make that follow up apt and talk about these issues with doc and rep too. okay? good. off now I am sure another will be by to reply soon.
PEACE
BMW...Tina

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.
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
LOVE YA Lily.
PEACE
BMW...Tina

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

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?

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.