Hi Lily
Good to hear from you too. It is so great that more and more people are getting the stim. It does really work. Like I said........it was just a bad week. Feel good tonight. My leads ended up in a little bit better place. When you have V2 on, that controls your upper teeth too. So, I think no matter where he put it, it was going to make your teeth go stimmey!! Sounds like you are doing well. Hang in there girl......You are doing great.
Cheryl

Hi Cheryl,

I am so glad things have been better the past few days and I hope it continues.
my lead is on my occipital nerve on the back of my head. the occipital nerve pain goes into my left eye and kind of feels like v1 pain, but it is definitely my occipital.
I have been having problems with my v2 again since I had dental work that was needed. they felt it was too early to put a lead on the v2. t.hey are hoping that it will calm down on it's own and that it is just irritated and taking it's own sweet time calming down. if it does not, they said they can add a lead on the v2 or I can try glycerol rhizotomy. I will opt for the lead. I wish they would have just taken care of the v2 while they were in there, but dr said it needed to be acting up longer. I dread the thought of another surgery or even the possibility of another one. to me it would have been much easier to take care of it while they were in there.
Even though I am having v2 pain, it is so nice to have my occipital calm down. it was definitely the worst pain for me lately. this pain made me very nauseous like a migraine and I have been losing weight. I got on the scale yesterday and have now lost 26 pounds. I was a normal weight before and now I am getting very skinny. my clothes are hanging on me and I can't wear some of my pants anymore. I figure I can put some of the weight back on. Yesterday I got in the kitchen and made apple dumplings, a warm maple vanilla custard sauce and a warm cider sauce. Put the dumpling on the custard and drizzled the cider butter sauce over the whole thing.
my poor husband, I am trying to gain weight and he is trying to lose weight. we are not going to work well eating together.
My stim is still working well. I played with the settings some yesterday. I did seem to have a bit more pain last night for a few hours. I could feel the pain trying to give me my eye pain so I turned it up a bit more.
it is nice not to have all the wires hanging all outside my body, but it seems a little more trouble adjusting the stim. I have to go find my paddle thing and then sit still and try to figure it out. with the temporary, it was kind of nice just to reach down and turn it up, but I would rather have all the wires not taped to my body.
today I am going to try and figure out how to charge my stim. haven't even looked at that yet and I figure I better before my battery gets too low. I don't even know how to check the battery charge yet so I have homework. I know my rep showed me, but I was in so much pain I did not hear anything he said.
hope everyone has a good day

Easygoing

It was nice to talk with a couple of you and hear how things have been going.

@Easygoing I hope you are relaxing and distracting yourself in the kitchen . Always good to do something fun . I will be over for dinner lol
Your weight loss I hope starts to reverse a.s.a.p. make sure you eat healthy food and Chocolate ... We all need some Chocolate. Keep taking things one day at a time . your doing good .
I wish I was able to help more with the issue of learning programs. .. having more then one lead to one area . well not that I really want to have that . but I just have one lead to my lower right , my V-3 . I do Not have a battery I recharge . Hench my naming the device T-Rex .
I thank everyone for sharing and helping each other .

@Lastnerve . can you feel the positive energy I am sending to you on the west coast yet? don't be to stressed out about tomorrows appointment . try to get as much time as you possible can with the rep . and adjustment can be made on both ends too ...the rep end .. the doctors end . bring up the dot story you shared with me aka the good spot . Dont ever lose your humor humor helps With patience and healing and I like your laugh.
non stop wishes for some heavy duty successful tweaking,adjustments with the programs and the rep all day tomorrow into the days that follow.

@Cheryl ..dont forget to ring me later when your back from doc. ttl

One more thing would like to ask everyone posters and readers as well to take vit -c, talk to your doc about getting flu shot and try to eat and be/stay healthy as each one of us can . fall and winter always seems easy to get flu virus and many different other cold infection and viruses .
Thanks Ya'all
PEACE
BMW

For all of you, my friends on this thread that your pain is manageable/managed with the device and that you are doing well!

ASAP,
Mark56

Hi everyone, I just found this site today. I don't know why or how I missed it earlier as I am actively on two other sites for TN. This one is the only one that has information, and a lot of it, on MCS and other options for ATN. I have exactly ONE person that I have been able to talk to about this prior to finding you all here. Thank you so much for sharing your stories, the good and the bad. No one wants a sugar coated version, reality is what I want and need. I'm not sure what direction I am heading in as far as solving my problem goes, but I feel like now at least I have some answers to pursue further, from people who have actually experienced it, not just some random study on the internet. You have no idea how wonderful it feels to read the stories of success, to feel hope, even if it's only a little.
Thanks again for being here, for sharing, for supporting.

Hi and welcome to neurotalks T.N. forum Painterchic
Please let me or one of us know if we can help you in anyway. I was first in the states to have stim for my face pain (a.d.) and have been helping other since 2002. finally decided to start a thread and gather some folks and info and just have it here where others can find it..and GOD it is so gratifying to hear you say this thread helped and gives some hope. you will never know how much you just made doing this thread so very worth it. Thank You.
Are you trying to get approval for a stim?? would you care to share only if you feel like sharing...what area of face,head the pain is and what state your in? Please know that all of us here welcome any questions and we wish to help with info support and just being here to listen ..cus we understand and know what having this is like. We are GLAD you found us.
sending you low pain and a big bowl of hope to you.
PEACE
BMW..Tina
P.S. Do you paint canvas or do you paint houses and rooms???

Lastnerve--- dont forget that post it note !!!!!!!!

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