NeuroTalk Support Groups - Free SCS Medtronic Trial

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Hello everyone. Had to lay down for an hour but back up and changed my program.

This is a tapping sensation.

Am I suppose to leave it as low as I can ? I've got it tapping at a pretty good pace right now.

Any movement I make causes the sensation to move and the tapping to get harder and then softer ?

So far not reaching my mid foot or toes. I am going to walk around the yard later as it is so very pretty here today and see how that works.

Thanks everyone.

Debi

Hi Debi,

So sorry you had nausea problems with the anaesthetic - it was probably being carried over in my vibes:D

Great thought on wearing Bubba's pj top, on all counts, common sense, comfort and comforting.

I am not personally experienced with the use of an SCS, but I have read the Threads. I believe you are doing right by trying a different programme and starting it low, increase the settings as necessary but do remember to Log everything. It sounds like a good idea to exert yourself - with support - by going shopping on Monday. Just make sure you stop with enough energy and reserves to get back to the car should you start flagging. Until this outing, experiment as much as you can, find that perfect setting.

Just remember to follow all the rules for looking after yourself and your surgery sites. No stretching or exertions, no lifting…

Heal quickly, benefit greatly.

Dave.

Dear Debi,
You made me cry when you said you wore Bubba's pjs.
I can imagine it was wonderfully comforting.
Glad things are going well but sorry you endured Nurse Ratchet and nausea.

I don't know about SCS but maybe private message PamelaJune as she has one and is always kind about sharing info.
She is away this weekend at a place that helps folks deal with chronic pain
but she is logging onto the the forum although she probably doesn't have much time.
Or log onto the SCS forum and ask there.

Can you lie down comfortably? I am very unclear as to where and how this device enters your body and where the controls are so you can change programs.

Looking forward to hearing how your outings to the supermarket go.
Thanks for the update.
I hope everything continues to go well.
D.

My dear friend
The tears of sadness and comfort as you describe
it all
I believe it was meant for you to wear Bubba's shirt
Oh dear sweet friend
I so pray all that can be done
To be another successful story
Few to be found
You are a very strong woman
Loving wife
And blessed to have two healthy great kids
You deserve life without pain
We do not ask for our pain
To eliminate any pain our body inflicts on us
You sure take the cake
You are brave
Strong
Please please please
Blast blast BLAST
Listen to the warnings
I am cheering you on
Move on in life with relief of anymore
physical pain
Or any for that matter
I am sending angels
God is good
Amen

One flew over the coukoos nest

Quote:

Originally Posted by Diandra (Post 1188060)

Here another friend

Ooooh I remember her
She was awesome
As all the cast for that movie

Glad you are with us
You too are a absolute
Gem
You are a positive individual
Very much needed
aNd us here in return
Love
Me

Good morning :) Monday, Dec 14th

Saturday night I read more of Pam and Mark's posts on their SCS's. Mine is going pretty much along the same path as far as having to rest the first 2 days. The rep called me Saturday around noon and I asked her about the stuff they used to put me to sleep.

She said they have to use more during the SCS trial than I would have had for the back injections. So there is my answer but I do want to know what it was because I don't want that stuff anymore ! I'm sure they have other options.

The rep told me to keep the unit as high as I could but I could not walk with it on a high level.....I looked like a Claymation character walking around and very unsteady on me feet :eek:
Of course the kids loved it and laughed at me when I would holler out because a movement 'hit' me good :D

So I turned it down and it's been working better for me.

I'm still on my regular pain meds.

I have not had a problem laying down with this trial unit which is good. I also have no problem sitting.

I did not feel like going to the grocery store yesterday so instead I picked up around this very, very messy house and put things away. I went outside numerous times and walked around the driveway.

Because of all my activity yesterday I woke up in the middle of the night in horrible pain as expected.
(still not the same as walking around that grocery store floor but close)
I laid back down on my back, which actually felt good, and turned this sucker up to a good humming.

I could still feel the pain but it was not as 'sharp' and I was able to fall back to sleep and so far this morning I have not turned the unit back down. I guess your body gets used to the vibrations.

Some of you know that I'm not very keen on having a permanent one implanted BUT I'm going to have to give it some real thought.

I would love to be able to get off the BuTrans patch completely and possibly some of the gabapentin but even if I'm unable to do so I guess having this as another 'tool in the toolbox' would be a plus right ?

I really, really wanted to start looking for and getting an above ground pool with a nice deck around it. Thought if I started in January we might have it up and running by May ? If I get a permanent in January would I even feel up to overseeing this project ?

Thanks to all for reading this.

D......I've had one of Bubba's PJ tops on since I had the trial on Friday. It has been so comforting for me ! Not sure why I didn't think of wearing them to bed before this. I'm sure he's laughing at me from above for the way I 'look' in them :eek:

I have to add that I've had to block out that horrible week in August in order to get some peace of mind. When I remember those feelings from that week I just can't move or think straight it was so very raw and I keep seeing his face.

I love that manly man so much and even though Christmas was not something he loved I will miss him so badly on Christmas morning. Christina and Jonathan have offered to come and stay the night on Christmas Eve if I want them to. I'll just have to wait and see how I do. Our kids had been long gone from mine and Bubba's Christmas mornings and we could get up when we wanted and have coffee at the dining room table before getting ready to go and see what all the kids got for Christmas :)

Love y'all :grouphug:

Debi

Hi Debi,

Thanks for the update. I'm glad you've been able to get around some. It's sweet that you wear Bubba's pjs. I am sure you look adorable.

I hope this trial brings you clarity. Of course it may be having it out that gives you clarity. Sometimes we don't realize how much relief we are getting from something until we don't have it.

Be well my friend, :hug:

Just seeing how you are

Hi Debi, just a quick hello to see how you are doing with the unit. It is also such a difficult time for you right now, your first festive season without Bubba. I can't imagine how you feel, but Im sure he is with you in your heart and wrapping his arms around you. :hug:

Hey Debi,

PamelaJune beat me to it! I was just coming here to ask the same question.

Be as Bubba would wish you to be this Christmastime.

Dave.

PamelaJune and Dave

So sorry I just saw your posts to me from Dec 24th :eek:

I've really tried to 'talk' myself into 'liking' the SCS during the trial but I just don't think it helped much.

If I can't sit and have my hair done, go home and rest for a few hours and then go out to dinner (parked right in front of the restaurant) without limping out of the place in horrible pain then I don't think it was a success.

I've heard others say they were upset when the trial was removed because it helped them so much.....it was just a huge relief to me when they took it out.

My daughter said she didn't see a different in my pain with the trial.....my son says he doesn't think the trial lasts long enough to get a good indication whether it will work or not.

My next pain appointment is tomorrow afternoon. Since I'm not going to go with the permanent SCS I'm going to talk with him about titrating down off the BuTrans patch and try another long acting medication.

I'm scared to titrate off of the BuTrans but I've only tried 3 pain medications and I'm on 2 of them now so I haven't explored other medications.

Oh I don't know......I'm in pain from cooking on Sunday (stupid idea) and I'm tired of hurting and not being able to do Anything at all. Forget making any plans other than going to see the dr......I have absolutely NO idea how I'm going to feel from one day to the next. I just want to scream my head off it's so frustrating ! And my Bubba isn't here to say "are you ok ? Can I get you something?".......alone and in pain is so much worse than being in pain with someone by your side.

Hug your families and friends tight and let them know how much they mean to you. It really will make a difference :hug:

I know I'm preaching to the choir but thanks for listening. I sincerely appreciate it my friends.

Debi