Hi Lily-

I so hope the difficulty of yesterday is not repeated today and that your Last Nerve will be controlled by this device.

Praying,
Mark56

......praying for you ........
........................don't give up.....
Rae

BMW was kind enought to have started this thread because our mutual friend, Calewark aka Cheryl, was struggling with face pain, trigeminal neuralgia, and working in the direction of her Trial. The Trial was both flop and benefit, as Calewark has recorded, with the wire harness dragging down off her face and chest resulting an early termination to the Trial. It was at termination Calewark first realized, "hey, this thing was WORKING!! Put it back!!" Alas, too late. But then she was scheduled for permanent implant.

Today I had the privilege of a phone call from Calewark. She was checking on me. Her report, however, was alarming! Her pain has been over the top for many days, and now she has been started on meds which are better addressing the nerve pain as she awaits her 5 August permanent implant surgery. The wait from Trial to Permanent is SO HARD!! SO Hard. I hurt for Calewark, my sister in this forum, for her horrible pain and the wait. Soon her time will come. About a couple of weeks, and I pray that God will come alongside her and hug her a good one to help with this long wait for help through surgery. [Oh, I see the smiley pray icon has moved in the list again]

Well, anyway, Calewark has not even come on NT lately to read because pain has been so overwhelming for her. Give her a prayer if you will, OK?

Many thanks on Calewark's behalf, she appreciates it!
Mark56 PJ

I too got to have a chat with her. It is an ugly cycle pain stress more burning monster... Special hugs to you Cheryl .

If I was there I would drive and stay !!!!!!! we will work on plan a plan b plan c things will be okay try to relax take a hot bath and enjoy some "me" time tonight .

Oh Boy ...seems like a bumpy few waves for many of us right now . I think I am lucky to only have a cold or maybe the flu. T-Rex is stomping around eating the flames . and I am fighting the ick .
I think we need a few words for / to all that have, and are ,sharing here on this thread and for all the readers that visit this room . May the Heavenly angels and higher power stay near us to provide comfort, strength , be a light when we are in the dark and feel alone ,... be with us to guides us threw our challenges and issues safely and successfully . May those of us who are in the different stages of stimulator implant find courage and serenity and remedy for their pain... there are a few Cheryl, Lily, Leagllady, fionab , S.H. , ... yes more then a few... Please know all of you and.. more the yous are in my prayers ,in my mind and heart... wishing miracles for positive everlasting management of pain and improved daily living.
Please use me ,threw you , use me . to help others in the most positive ways .

ThankYou.
PEACE
BMW

p.s. lurking in between the " ick " .

HELLO EVERYONE,
Thank you Tina from the bottom of my heart. Tonight, when I talked to Tina, and the last several nights all I do is cry. Along with the pain, my world seems to be falling apart around me. My family is tired of me and my needs. I know they understand ( kind of) my pain, worry, unhappiness, concern, sadness, etc. But not like Tina. If she was not in my life, I really do not know if I would have a life anymore. I have so many worries that have come up for the stim. surgery. It is complicated due to where the leads are going to be tunneled and where the incisions are going to be. One way the facial nerve cut get cut. The other is problems with the incisions are from my mvd. The time is dark right now and I just wonder why all these problems keep coming up and I can't get a break and have everything go well without complications. The emotional part is the worst. Hell with the pain. I am getting used to it thanks to a lot of meds. The big problem is I am really alone. I live by myself and I have no one to just talk to ( the good things and the bad ) and just talk back and forth about anything. I am usually okay with living alone; but with this, it makes it so much harder. Tina has to listen to me cry and listen to all the daily problems. She always has the right answer. Take a bath, get something to eat, relax, and a good nights sleep. That is all she can do. I know if she was here, my days would be better. Isn't it strange that a person who you have never met can actually be the one you really want to talk to. The one I call when I am sad, scared, worry, and at my end. I appreciate you Tina so very much and thank you from the bottom of my heart for being there for me. I think my family is just tired of me. I really do not blame them. You understand and that means so much to me. I know you will be with me on the 5th. I know I will feel your presence. Your prayer is beautiful and said so much. I am sorry that I burden you so much. I guess that it is what sisters are for. Please take care of yourself. I know you feel terrible and you need to rest more. You have a difficult job this time of year. For all of you that talk and communicate with Tina, let us all say a special pray just for her each day saying how much we appreciate having her in our lives. Love you and take care of your self.......you have to cuz we all need you
Love you
Cheryl

When I talked to Mark today he sounded good and then all of a sudden some burning pain came back. While we talked he upped PJ ( his stim ) and it seemed to help a little. He sounded so worried and I wanted to cry for him. By the end of our talk, he did sound better. Mark was there for me to listen to my worries and concern of the surgery. He always gives me encouragement that the Lord will take good care of me. I realized that talking to Mark is we think that the minute we get our stims that all our problems are over. What we are finding out is there is still challenges, things that go wrong, and that nothing is perfect ( except God of course ). Pray for Mark. Let this be just a little thing and he just needed to change the program. We know the burning pain is always there. The stim is there to interfere with it's continuous efforts to drive us crazy. That is why we have the stim and Mark and the stim just need to learn to live together. It will be okay. It just takes time like everything else. Thank you Mark for being so kind and for all your prayers. Thank you for listening to me today. At least I did not break down and start crying. I was already cried out from talking to Tina. Take care of yourself and know that I think of you daily.
ASAP
Your Sister
Cheryl

Lily,
Hang in there. Give it time. It will be okay. Just relax . Each minute and hour changes with the trial. You just have to learn where to set the the device and you will learn what is best. Take care of yourself and know that you are in my prayers.
Your sister
Cheryl

speechless, in tears.......


it's not right for you to be alone! you are NOTTT a 'burden' to anybody!
You are a blessing, my friend and you've brought so much to this forum....
We 'need' you just like you 'need' us!!
We're in this together and please know you are nOT 'alone'!!!

There has GOT to be the light at the end of the tunnel.......
right around the corner has to be your Saving Grace......
God Bless you dear Sis

.....sleep well for the nite.......
tomorrow will be a new day.

We luv u
Rae

Wow, praying for Lily and for Cheryl that pain be abated and controlled, then for BMW that Tina get over the ICK! So much with which to deal. We each have our issues, and hold one another up in person and in prayer. I feel such gratitude to be among you all. Each reaching out to the other.

Blessings upon all.
Peace,
Mark56 PJ

Cheryl,
It hurt my heart to hear you talk - I am so sorry that you are alone in your fight with this thing - I hope that you know that you have all of us here to support you as you work through this all - because of that, you will never be alone, ok? Please rest assured that we are all here for you.
I am trying to keep people realistic about this stim, in my world. Loved ones can have the "all or nothing" "fixed or not fixed" attitude about this device. Thankfully not my husband, though. He gets it really well.
I am having some mixed results, and feel like I am winging it with this trial. On Monday I got it programmed. On Tuesday, I had my Chronic Pain support group. I had pain, so I turned the thing on for a 1/2 hour, then turned it off for a while, and then the pain would come back, so I would turn it back on again. I cycled this way with it until the evening, and when I was done, I got that awful pain that makes you seriously consider the ER. Kinda a kick-back pain right after I turned it off, and deep into my eye. So last night, when the pain came, I turned it on and left it on for almost 3 hours. 15 minutes after I turned it off, I got the kick-back pain again, and again really involving the eye. (I am a V1/V2 TNer. So the leads are over the eyebrow and under the eye.)
Today I am turning it on without there being any pain, and leaving it on for a long time, to see how that goes. So as of right now it is indeed a mixed bag. The stim DOES interrupt the pain, when it is on. But I feel like I am trying to read a wild horse, and don't know quite how to go about taming it.
Does this make sense, anybody? I feel like I am straddling the fence on whether it works or not.
Thanks for any and all feedback, and I want you all to know that you are in my heart and prayers as well, and I pray that we all find that which we need out of all of this. Lord knows we deserve it after fighting this pain for so long.
Much love ,
Lily