Goodnite Johnboy

My name is Rae
I havn't been on here for several days and i feel a bit guilty of that, as i've wanted to be a better support to all the ones here who have given me so much support.
KS, Vanna, Mary, and so many others here - wonderful people!

I'm kinda in the same boat you are in Re: SCS. I did the trial, seemed to do what it's supposed to do and so now I'm in the
"in-between" time of getting the permanent.
I have many questions, doubts, etc same as you are facing. It does so much good to just hear other's testimonies, and take note of what they've been thru and all the good suggestions they pass on.
So, in that regard, it's kinda a 'good' thing that there is this
6 wk (or so) waiting period.
I'll need to read back thru some of your previous posts to see exactly what your battle is, but just know you are most certainly NOT alone.
Feel free to PM me with any Q's and we can compare notes or whatever. The more people we are in touch with, the better.
So, just wanted to make myself available to you and perhaps you will have input that will help me (and others!)

And for the rest of this wonderful 'Walton Family'
I see the frustrations you are facing and my prayers are with you all......you've been there for me in my greatest times of need. We are in this together.
Truly Caring
Rae

Rae...

What are your reservations concerning moving forward with the permenant SCS unit??? Ask away...

KS

I dunno.....mainly i guess it has more to do with how the docs seem to end up treating the pts. once they get their paycheck for the SCS. I've heard it from other sources that they (pain docs) like to push these SCS's so that they can 'wash their' hands of us and turn us over to the 'Reps'. My nearest rep is 3 hrs away.
The doc who does my SCS is real good at what he does. But i also think he's a bit 'over-confident' and he isn't very good at sitting down with his pts. and really explaining on a level that we can understand and grasp on to. It just leaves us with all these loose ends.
I'm not stressin too much about it, but like Bobber, just want to hear from as many as possible because this is where the true heart and soul is. The medical professionals certainly are too busy (or whatever) to talk on this level.

Okay.. okay... I am hearing ya Rae....Let me say first that I hear you and allow me to shed some light on your concerns so you can add some thoughts in your collect pile from ole' KS.... First..plz..plz..be comfortable and dot all the i's with your "neurosugeron" prior to saying yes...ask every question you can of them including how much and what % they think you will benefit from having the SCS implant.... it's a big step you need to be comfortable with it!!! Now my regular RSD/PM physcian referred me to the neurosurgeon, who's only responsibilty was to put the dang thin in..after it is implanted and that Dr. was happy with my post op. condition... I was referred back to my normal RSD/PM Dr. from there forward and my SCS rep's always came to my appt.s to meet with me at the same time as my Dr... I have never traveled to them..they always matched their schedule with mine and were present at my next Dr. appt. As far as the big push away......I believe the SCS push has taken a bit of a turn..as many are chosing alternative pain management routes ie..ketamine.. possibly due to the negative outcome, but some swear by the benefit they receive from their SCS.... possible spread from the SCS implantation surgery ??? yes.. it's possible... I have had spread AND my unit is not getting along with my RSD as the vibration really upsets my pain and it tells me so! So as far as the Dr.'s just saying osta-la-ves-ta after your unit is in..if you are happy with the results..I'd say heck if you are happy with your Dr. tell em so that you want them to continue your treatment..the same goes however..if YOU feel that you don't get straight answers from your Dr. prior to putting the SCS in.. and they don't offer answers you need...then it is time for you to walk, and find another Dr...... my friend! Respectfully said!

KS

WELL SAID and Bobber - did you read that!!

Like I said, we're in this together!

Thank you !! Good Job! .....and to think.....the medical professionals are PAID very WELL to NOT say all that!

You've made my day.....Now i'm gonna head off to la la land

Rrae... and Bobber..

I am very happy to have helped you... let me know if there is more I can do..and.. I wish you a very restful nights sleep!!

Ole' KS

Great question for Rae, KS!! Also, Rae, what worked for me in the decision-making process after I did the Trial was ........ did I miss not being able to use it?? For me, obviously, the answer was yes. I craved the sensation the stimulator gave me more than I did pain medication. LOL!

Vanna

vanna
How long was your trial,,some are 1 week , I hear of others being as long as 1 month,,and how long have you had RSD and is it stage 1 ? How long have you had tha SCS..and is your RSD in 1 limb,lower body,ect,,,how long did you have RSD before trying the SCS and is it still successfull ? and are there any meds that seem to help with the SCS,,Its alot of questions,but As others have said,what is good for one , may not be for another,,but I think by talking to other patients and looking for a corralation in symptoms,severity,ect,,helps to determine . do you know if your in SMP or SIP ? thanks fo the imput,,,,bobber

I had RSD and Brachial Plexopathy (in all 4 limbs) for 2 years prior to me receiving my 2 SCSs. It will be a year soon, and they still help me tremendously with the nerve pain. Initially, they helped more symptoms (muscle fatigue, tremors, burning, numbness) but all of those problems resurfaced after around the 6 month mark. Nonetheless, the stims still provide relief for the "nagging" nerve pain. The only problems I have with them (so far) is the implants cause more of a pressure-type pain in my lower back. Also, I'm hoping it's just my imagination, but both implants may have started t o migrate..... which I hope is not true because I'd love to keep them in. I don't know what SMP or SIP stands for, and I don't know what stage of RSD that I am technically in (I was never told). The only thing my Pain Management doctor told me was that I have Lumbar RSD (but the worse burning areas for me is top of feet and shins).

As far as how long I will get relief from the SCSs, only time will tell. But as you, and everyone else with this problem knows, even a mere MINUTE's worth of relief is gratefully welcomed

Vanna