[ynotretsevlys]

Hello , I had a scs trial implanted on monday am. At 1st it seemed to be working pretty well. Now I'm not so sure it would be worth having the perm. unit installed. It doesn't seem to help as much as I expected. They will take the leads out on Thurs. am and I really don't know what I'm going to do??? Does anyone know if the permanent unit is better or about the same? This is being used for rsd/cprs in leg and nerve pain in shoulder and arm. It does work some but ..............
AJS

[Rrae]

Glad you've found your way to this wonderful neck of the woods....
But I'm sorry it has to be under frustrating circumstances....

Where are the leads placed? I'm guessing in the cervical ? since it's targeting your shoulder and arm........but to cover the leg.....hmmm

Mine is a lumbar implant and it does wonders for the nerve pain in both my legs...
Do you feel you are getting better coverage with your nerve pain in your upper body?
Have you been in contact with the Rep who would be reprogramming and 'tweeking' you?

If it seemed to be working pretty well at first, that's a good sign. And if your trial leads are just percutaneously placed, it's very possible the leads have slipped a bit, especially since they are at the mercy of the tape all over your back.....yes?
I hope your Rep will work with you in trying out different program settings to cover different areas B4 they pull the leads out.....
Please let us know how it goes!!

Truly Caring
Rae

[pooh_ac]

Originally Posted by ynotretsevlys

Hello , I had a scs trial implanted on monday am. At 1st it seemed to be working pretty well. Now I'm not so sure it would be worth having the perm. unit installed. It doesn't seem to help as much as I expected. They will take the leads out on Thurs. am and I really don't know what I'm going to do??? Does anyone know if the permanent unit is better or about the same? This is being used for rsd/cprs in leg and nerve pain in shoulder and arm. It does work some but ..............
AJS

I would guess that rrae is right about your leads slipping some, talk it over with your doc and your rep about the change in pain management etc

[ynotretsevlys]

Thanks for the replies. I never thought about the leads slipping . That seems to make some sense. They put in 2 leads. 1 high and 1 low. I did talk to the rep the day after they were put in,when they were doing more good. I am going to call him right now and let him know what is up. Thanks again,
AJS

[Rrae]

This is a pretty BIG decision, so make sure you've given it a real good 'run' .
MAKE the Reps take however long it takes to get results. That's what they are paid to do! I felt rushed because the hospital was busy and it caused me quite a bit of stress.
Don't settle for anything less than 100% of their attention B4 taking those leads out! Some Reps will work for HOURS if that's what it takes.
They have a zillion different settings to try, so there's apt to be a combination that'll work for you!

I'm intriqued that they've done one lead higher than the other! I've heard of this (to give more coverage) , 'staggering' the leads.
Did they do this just for the trial or will they do it that way if/when you get the permanent.
So, you've got dual leads. Are they talking about percutaneous (under the skin) - that's how mine are - ...or, are you going to get the 'Laminectomy', which is more involved. ? Just curious.

I really hope they spend ample time with you with the different settings if there is any remote chance that this could give you pain relief!!
You deserve it!

......not to mention, we're talking $100 thousand dollar unit here!
Soooooo, yeah. Make tomorrow count!!

Prayin,
Rae

[vannafeelbettr]

Like Rae said, spend as much time with the SCS Reps and let them work their magic until things are right (sounds like something is "off-whack"). Getting this trial is a big deal and some big decisions must be made so be sure to fully engage yourself with your Rep (now is not the time to be shy) and do not get discouraged off the bat. These stimulators are not your area of expertise (unfortunately the pain is for you) so be sure to work together as a team. Your Rep usually keeps in touch on a daily basis with you during the trial so just go ahead and be as descriptive as you can. The sensation the stim provides can take a few days to get used to, but if things are working right your decision to go or forgo the permanent implant should be a no-brainer (at least it was for me )

Good luck!!!! Vanna

[ynotretsevlys]

Well After talking it over with the rep, I had them take the leads out .After just a little time I made my decision. I'm going ahead with the perm. unit. I realized that I was getting more relief than I thought. All the pain was back and I wish I had that think now!!! Thank you everyone for the advice. Now the insurance dance starts. Wish me luck.
AJS

[Mark56]

Hi AJS-

I am sorry to be late to the discussion here, and extend wishes along with hopes and prayers that the permanent install you have elected will be the very best solution for you!! My rep so far has been very helpful in and through the stim trial, then after as we proceeded toward completion of the steps toward the permanent install coming up next Tuesday, 29 June. Everyone so far has mentioned the concept of speaking with your rep every day, and during my trial that was the standard. If I was not calling him, he was calling me. The incentive being for the rep to see to an install which is optimally best for patient. This builds goodwill between patient and manufacturer which spills over to the relationship with the physicians. Everyone is interested in providing the best decision on the implants since they do become part of your body.

Counting down to the permanent install will include a number of steps for you, no doubt. For me there was not only my telling the rep "I WANT IT BACK" but the consultation with your primary pain doctor, who will write notes to the chart regarding your success, conferring with your surgeon, who will assess your completion of all of the multi-disciplinary steps, surgeon recommendation of the procedure to the insuror followed by their consent to the permanent procedure, lab work to prep you for surgery, final meeting with the surgeon to sign off on the "ARE YOU REALLY REALLY SURE YOU WANT THIS?" statement, then, voila, the surgery. In my case the one week trial ended on 20 May and all of the intervening items resulted in calendaring my permanent for 29 June. ALMOST THERE!!

May your process be quick enough but not too quick, and may your care give you results which you KNOW provide better pain management for you!!

Prayers and hopes,
Mark56

[Rrae]

THANK YOU for the update AJS!!
I was literally holding my breath while I read your post to see if it is a 'yay' or a 'nay' !! And it's a YAYYY!!

omg this is exciting!!
PLEASE keep us updated every step of the way!! Just keep posting on your thread here and it'll keep 'bumping' it to the top so we all can team up and be your supporters!! No lack of that here my friend!!

Mark pretty much said it all! it's almost as tho you are riding on his coat tails ! So 'listen' to this guy!!
Yes, the waiting is the hardest part but that's what WE are here for!! To either A) help you bide the time with tears and cheers or B) to 'learn' from YOU as well....and 3) drive you crazy and make you wish you'd never stumbled upon us

it's a win-win situation
...I've got SO many questions, but I don't want to 'bombard' you.....so for now just let me join in with Mark's prayer's and best wishes and to say 'Congrats'......never lose hope.....never.

Rae

[ynotretsevlys]

Well I've been waiting for the answer from the insurance co. , no word yet. There is a chiropractor(Dr. Erdman) here in town that has been trying to get me to come see him for a few years. Every time I see him around town he tells me he knows he can help me. So what have I got to lose, all my other doctors have just about given up, and just give me pain meds. I have been seeing him for about 3 weeks now and I have had about 50% pain relief. He's not your typical chiro that just adjusts your back. He is taking a totally new aproach , and so far it's working,as much or more than the spinal cord stim did. I don't know if I'll go forward with the stim now .