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

Hi everybody,
Sorry that I have been so absent. It's been hard. I just requested to have my stimulator removed today, and my neurosurgeon agreed and is making the arrangements.
More to follow.
Lily

I am so sad for you that this did not work out to be your solution. This is absolutely awful news, and I continue to pray for you that your situation will come out for the best. How I so hope you may find relief!!
Prayin,
Mark56zz

I am so sorry for my absence. I feel so selfish for not participating more, and I promise to be back again sometime soon. The "explant" is taking place tomorrow, and I cannot tell you just how thrilled I am to have this device out. I am truly sad about losing it - there was great potential! There were times when the unit did its job well.
But the line is still too short, will always be too short, and they say that they don't have a longer one. The NS swears that he put a loop of a couple of inches in there, but just the second day after the second revision surgery, There was zero slack. Zero. So he told me to just keep stretching and stretching and stretching. And I did. So now there is a tear in the insulation at my collarbone and I keep getting zapped with electricity. This is such a comedy of errors that I must be doomed. But at least we found this all out with a PNS, and not with Deep Brain Stimulation or Motor Cortex Stimulation. Just think about how bummed I would have been then!
I know that I am just trying to make light of this all...it has been a very hard journey and I will be so glad to get away from the neurosurgery department - for a very, very long time.
Thanks, in the meantime, for the hugs and support , and I promise to be back soon to pay it forward.
Lily

Lily

No words ... But I am still here

Okay I do have some words.. to/for you Lily. in no random order..
A WARRIOR!!
I am sorry.
THANKYOU for being brave ,strong and wiling to share yourself and your journey
on this thread. It so so easy to share when things work out. when things are okay and dandy candy.
It takes a different type of warrior tn friend to be able to try and swallow it all and share when things are not working and the stim has to come out.Sharing the truth on this Stim/PNS thread is PRICELESS . ThankYou for that Lily. It ISNT ALWAYS going to work .
Your are right in a way IT IS GOOD in that the PNS can be put in and taken out and even put back in again. Deep Brain Stim and Motor cortex are very different from the PNS .
kkk I am getting sad this didnt work .. gotta go I tried to call ya the other day. did my message bring you out of your warrior cave? thanks for the post here.
PEACE
BMW .... back to lurking