Just want to give a very quick update on mylastnerve aka lily
she hasnt been doing so well at all after her surgery to fix the issues with her PNS. so far no improvement even tho the doc went in and adjusted/moved the lead. plus she is just getting over a bad sinus infection or cold or some kind of funk. She is to see her doc and rep tomorrow to try to program the unit better.
May things start tunning swiftly around towards the good.. towards the PNS working and to you Lily getting back into life and away from doctors and surgeries. I am so sorry things are not working but still hold hope that everythiong will change.
Oh yes I did sing you Happy Birthday on the phone a bit ago but I want to post a big Happy Birthday to you here.
Happy Birthday Lily
sending a giant huge wish that tomorrows doc visit really turns things around and the PNS starts helping.
big tight hugs to you.YOU WILL BE in my prayers thoughts and best wishes all the rest of this month and beyond!
keep being the warrior I have grown to know that you are. and know that we all care... just take your time with this and get to feeling better. but never forget that we are all carrying you in our thoughts!
PEACE
BMW

Just checking in...
Please bear with me, I am a little past tired, and have no patience right now. So I will keep this short, and please do not read it as anything having to do with any of you all.
Thanks Tina for the update above. This is hard times. The NS repositioned the lead AGAIN in a different place than promised, AND did not loosen the wire going down my neck. So I have been deep in the land of unhappy blue funk.
So, I sat with the rep, and we played with the settings. Good news. We are having good results regarding the lead at my nose - I am now able to wear glasses. I am still messing with it to see if it is helping any with pain. Not so sure. So, a bit of good news.
Bad news is, the wire to the unit is miserably tight. When I tilt my head slightly to the left, it lifts the scar, the unit, and the tissue around it, quite visibly. It pulls on the leads in my face. I was sitting waiting to speak to the NS's PA, and my SIL pointed out that I hold my head to the right. Tipped. I had not noticed it, but I had been having horrible neck spasms. Now it all makes sense. When I think about it and do hold my head straight up, it is taut. I mean like a guitar string. This was one of the things to be fixed at the last surgery - BUT THEY ONLY MADE IT WORSE. So before I saw the rep, I was thinking that I was 0 for 2 regarding results - hence the dark dark mood. I just couldn't talk to anyone.
SO.....BIG QUESTION....were any of you told that there would be a loop of extra wire put in? I had a feeling that he didn't do this. I convinced the PA to send me for an XRay, and there was NO LOOP - I had the techs show them to me.
I was told by others with these systems that this was done, so if you could all help me, were you told that there is a 1"-2" extra loop of wire put in?
I would be so grateful if others could share this info with me. Last bit of good news. I showed the PA what the wire was doing, and he shoe-horned me in for surgery 4/25/11 - next week. This is for a doctor w/ a 3 month waiting list. So I think now that they know it's really wrong. I pray so, at least.
Wish me well for Monday.
Lily

Lily,
I have had my candle burning and thinking of you ..the candle is bunring right now and positive energy and good thoughts are being sent your way for a good nights rest and the start to things FINALLY being cured and fixed.
I know you have been deep in the shadows of your warrior cave . Maybe ya heard my phone message echo threw the cave
I do have to say that for me I have slack in my lead so that when my jaw moves eating,talking and such the wire is not tight. I do not think there is a loop per say but the wire is just slack from my right ear and going down to lower right side of jaw.
It is good everyone who has a stim posts and shares info like this so the next one has more chance of less issues... well I would hope and pray but it really comes down to the doc I guess.
Lily you are and have been in my prayers . May God swiftly guide your threw the issues your have been suffering with for so long. May tomorrows apt be a renewal , re birth of things being suecssfuly and the stim working each lead and the battery all together in harmony and sepcialy You ...please God let lily start on the path to great pain reduction with the stim and finding her self getting back into life. Threw your son I ask you to help my friend "Lily" Thank You God.
big tight sis hugs to you warrior Lily and ya better know without any doubt I am praying and sending nothingbut positive good thoughts protection and comfort . Yes you will be in my mind and heart tomorrow. cross my fingers my toes my arm my leg and my eyes... swift smooth fixing and adjusting... please may the powers that be get this working properly for once and for all. AMEN.

PEACE
BMW

I am so sad that I did not catch your post prior to what I pray now was successful at fixing the tautness of your leads. No wonder you were experiencing muscle spasms if you were having to hold your head unnaturally to survive the tautness of the nerves... it only stands to reason.

May you receive healing that brings you to the place where you SHOULD be after surgery, and I also pray that THIS TIME it went well.

Prayin,
Mark56ZZZZZZZZZZZZZZZZZZZ ZZz

Nope...seems not. But I will try to see if I can live with this. Damn.
Lily

You ARE a warrior with a huge heart
hard few weeks for me kinda lurking but will ring you sometime soon Lily
There are other options if this does not work as good as it did during the trail.. and I AM here right with you no matter what sister!!
PEACE
BMW

Just Prayin for you, you brave hard fighting soul!! Hoping and caring that the best will come to be your lot, and that this will be resolved.

CARING,
Mark56ZZZZZ