I have severe small fiber neuropathy. Feet, legs, hands and arms. (possibly mouth) From my first visit to my pain dr a little over a year ago, he advised me that an SCS will probably be my best bet for pain relief. I have no A or C fibers left in my feet per skin biopsy done in Sept 2013.

I have been on the BuTrans pain patch (20 mcg/hr) and 3 oxycondone a day (10-325). I am now at the max for this combination of pain medicines that my dr's office will allow. I am also on 1800 mgs a day of gabapentin. I still have not been able to reach my 3 original goals: cooking, cleaning my house and grocery shopping due to the unrelenting pain.

A local charity has offered to completely pay for an SCS trial and asked them if they had anyone that would benefit from this trial. It's not based on income so I was very surprised when they offered it to me. One of the ladies in this office that I work closely with said she thought of me immediately because of everything I've been through this past year. And my dr agreed with her.

So......I'm having the trial done this Friday morning at 8 am. It will be Medtronic and I was assured that the reps are there every step of the way. This dr's office likes these 2 reps so much they invite them to their Christmas party every year. She said they are wonderful to the patients and always ready to help at a moment's notice.

As I've read on the SCS forum I know the reps are a very important part of this process.

Even though I've always said I didn't think I could do the SCS and pretty much still feel that way I am going to give the trial a go.

My NT family...I ask that you say a little prayer for me on Friday morning that all goes well.

I'll post when I can to let you know how it's going.

Love and hugs to my friends

Debi from Georgia

I will be sure to offer up a prayer for you, tonight and tomorrow. It is so nice to hear a charity and people around you have you in their thoughts xxx

It's me
Holding your hand
Log everything as you now start this process
My prayers are working on you
It is the after care of the reps that are about to
Hook you up
Find out what happens if you decide to have the perment
Unit
You want to be assured the same attentive manner
be there when you need them after selling you the product
WHEN YOU NEED THEM AT YOUR WORSE
TO HELP TWEEK OR FIND OUT WHAT IS HAPPENING
Did much of my own homework
But the most valuable is the one here
As they are personal experiences
I understand from my children texting in capital letters
means I am yelling
This is not the case here
Or ever when I capitalize
I pray nothing but absolute success
And kind treatment
From beginning to end
Keep that log of everything that is happening
Love
Me

Dear Debi,
My goodness....what a year you have endured.
Many prayers and blessings coming your way.
I am certain your SCS trial will go smoothly Friday and it will help you
reach those 3 goals.

What time are you going in and who is going to be with you?
Love and hugs,
D.

Hey Diandra and thank you for thinking of me now and tomorrow. I woke up thinking about it this morning and am now scared to death. But I'm going to do it.

My son, Luke, will be taking me as my daughter has used up all her time for the year at work due to everything we've been through this year. Christina didn't leave me and her dad the whole time we were going through all of this. Then when Bubba passed Luke took 2 weeks off and didn't leave me at all for those 2 weeks....lol....blessed to have these 2 kids.

I have to be there at 7:45 so we'll leave home at 7 am due to all the people going to work. I have complete confidence in my dr and his staff so I'm going with that thought.

Dr said he would leave it in for a week and I'll have to go back every few days to have the site checked and for them to tweek the unit if needed.

Debi

Thanks so much for your message. It really helps to know my NT family is behind me to support me

I was very blessed to have them think of me when this charity came in and talked to them. I have grown very close to one of the ladies at this pain clinic and the dr is amazing. He's had people that had so much success with these units that they no longer have to go to him. So I feel like he's not in this for the money from the SCS. He only does the trial and another surgeon that is not connected to his practice does the permanent one.

I can honestly say that unless this works for me 110% I won't be getting a permanent one. To have something 'implanted' in me just freaks me out. Of course I could change my mind. I'm trying to go into this open minded.

Thanks again for thoughts and prayers as I go through this.

Debi

I know you will be holding my hand as I go through this tomorrow. I will be able to feel your presence there.

I already have the log to keep as I'm going through this to document how I'm feeling and so on.

It's so hard to explain my pain to the doctor. I have so many different kinds of pain that hit me I have a problem putting it into words. Do others have this problem ?

Take care of yourself Eva and thank you for prayers coming my way.

Debi

dear friend

hope all is well
and yes some like us who have soooo many different kinds
of pains
all independent from one another
a new problem has arisen
and it was very difficult to explain
and two of my doctors are scratching their heads
pictures are on a different forum "focus on blessings"
sub: SCS
the pictures of left hand and right toe
blood and vein will swell prior would be piercing pain
then a pop and then a bruise
if it weren't for the pictures i don't think i would be taken
seriously
in addition
extreme cramping in hands and feet
so
you take real good care
and your grown babies are there for you
amends were made with my eldest
love
me

Dear Debi,
I'd be scared too. Yet how wonderful to have
Such great confidence and trust in your doctor.
Do you have an anti anxiety med you could take tonight to help you sleep?

Tonight when you go to bed, hold the image in your head of your doctor telling you the surgery is over and all went smoothly. I find planting positive imagery works wonders for nerves.

Your children are lovely. I am so happy Luke will be there for you.

Thanks for the details and please know from 7:45am on, prayers will be said for you. I think the good Karma of a sponsored surgery will spill over into the entire experience. It is so obvious that so many people love you and are cheering for you. All your NT buddies are here for you as well.
Much love,
D.

Hi Debi,

Thoughts and prayers will be winging their way to you from this side of the Pond. At least thinking about you will take my mind off the fact that I have a stranger driving me to and from my Infusion tomorrow. Interacting with others brings Anxiety to a head and add travel to the mix and I am on the verge of a Panic Attack already. So, as my travel co-incides with yours, I will spend the time sending you warm thoughts.

Then the start of our procedures mesh, so I can worry about you and pray for your Dr to be competent and efficient, rather than end up turning into a trembling wreck. This Trial truly is a blessing for you after all you have been through and with all the pain you suffer. It is a happy co-incidence that you take my mind off a stressful day.

I look forward to hearing of positive Log entries and the possibility of long-term pain reduction.

Dave.