Thoughts on SCS

Moira Joyce · 08-27-2012, 07:14 PM

Quote:

Originally Posted by Elysium1973

Hello all. New to these forums.
I had an L5-S1 microdiscectomy in may 2011 and at first had total numbness in the left foot. Since, the feeling has returned in the form of constant burning pain and allodynia. When I was with my first PM, he did 2 epidural steroid injections that were supposed to help break down the scar tissue at the S1 nerve root. He performed two and then decided it was time for an SCS trial. At that time I was only on Percocet 10/325 and cymbalta 60mg.
I went to see my neurosurgeon for a second opinion and he said it was way too early to think about doing that and referred me to another PM doc for more medication management. Incidentally, this new PM was the old PM's partner! We live in a small community so everyone kind of knows everybody else.
Anyway, I'm now on Perc 10/325, Lyrica 600mg, and Cymbalta 60mg. He did a sympathetic nerve block that was successful for two days and now the pain is back even worse. Not sure if I'm dealing with CRPS or sympathetically mediated neuropathic pain. Regardless, my question is:

1) do you think it's worthwhile to do the SCS trial?
2) do you think it's worthwhile to do a pain pump trial?

Incidentally, the whole idea behind the SCS is to get "a young person like me" off all narcotics. I'm 39. They also said they wouldn't give me any pain meds for breakthrough pain after getting the SCS put in. If I get the pain pump put in, they told me they would put in lidocaine and clonidine, but nothing else (this is the first PM). The second PM told me he wouldn't put a pain pump inside me, period. He would only consider an SCS if I totally failed everything else.

Very confused.

Hello
I am also confused, but my name is Moira. I am sorry there are so many people out there with cronic pain, my heart goes out to you. I am scheduled to have a scs inserted in me on 9/11. feels very ominous. I have in-op bone cancer, have had surgeries in the past. I had the trial for the scs and when I turned it off I felt a sense of relief, but I talked to people who have had it for from 2 to 9 years say they felt the same feeling in the beginning but now they love it.
So I have decided to go ahead with it, I don't know if I am making the right decesion or not? Any feelings or thoughts? Thank you, love Moira

Rrae · 08-27-2012, 09:11 PM

I'm so sorry for the reason which brings you here....

This is such a great place for support tho. Everyone here is very caring and there's lots of information to be had.

So, you've had your trial and you're a bit leary about getting the permanent. I sure understand! After all, this is a pretty big decision. I looked up your other thread and saw that you mentioned getting approx 65% pain relief. That's pretty good. To be honest, I'm not real familiar with how these SCS's do on bone pain. One thing I DO know is that the stimulation does take some getting used to. The good thing about that is you can change the settings and turn it real low (or off) if it starts to bug you too much. I have to do this from time to time, but in my case it's medication related. When my 3-day pain patch starts to wear off, my skin starts to 'crawl' and the stim really bugs me. Otherwise tho, it's very soothing to me and I wouldn't trade it for the world!

Please stick around and let us know how this unfolds for you. You'll get some good feedback from our friends here.

Caring,
Rae

P.S. Just a thought - you might want to start a new thread so others can see you better, rather than being tagged onto the end of this thread.

08-28-2012, 12:32 PM

Glad you joined us on here its a great place for getting lots and lots of information and also for feeling 'at home'

I too have a SCS , since August 2010, and I wouldnt change it either. It does take a while to get used to it. Originally I thought I wasnt getting much benefit from it, but now 2 years on people have remarked how much better I look and I definitely feel so much better in myself. It does help me with Failed Back Syndrome and neuropathic pain in both legs.........Like Rrae said at times the stimulation does drive me a bit loopy but then I just turn it way down. Im still on reduced medication and Lidocaine patches and I find the combination of the lot help me a great deal.....

Im sure loads more will come on here and give you lots of useful advice. Do start a new thread also and then you will be able to just pop in and out of it at your leisure.....

Take care

Jackie

Mark56 · 08-29-2012, 01:21 AM

A welcome hug for you in writing here.....

Yes, as Rae writes, if you begin a thread for your special needs, we can flock directly to you as we sense your needs; nevertheless, here in this particular place, please feel blessed as we gather 'round to pour our concern over you as we drench you in love of the group.

I am well over 2 years post op from SCS implant to quiet the fires which lingered in my lower body nerves after a serious car wreck and many surgeries. The neat thing about the manner in which I was implanted is the fact of having been allowed to program my SCS for my own body. Since, I have not needed pain meds related to the lower body pain at all...... I only use the SCS and a seat cushion to cover those needs.

Your pain from inop bone cancer must be very difficult while unique from our nerve pain, and IF you decide with your docs the permanent SCS is a good thing to give a go, then we will be alongside with answers to questions, thoughts, prayers, encouragement. I know the night before my permanent implant surgery in 2010 I found myself wondering "is this the right thing?" and "what if it doesn't work, or worse, makes things more unbearable?"

So, from one who is on the road with life after SCS implant, I lift my arm waving you on in encouragement that you may make the best decision for your needs.

Prayin,
Mark56

CoralToe · 08-30-2012, 12:40 AM

Moira - I might be able to relate a little to your pain. All of my chronic pain stems from nerve damage from surgeries to excise a destructive benign tumor (and subsequent recurrence of said tumor) in one of the bones of my toe. I can tell you that NOTHING is more painful than that was....it felt like my toe was trying to explode from the inside out. Thankfully it looks like my tumor is not coming back (for now)...but given the sensations that I have from my stim - which covers that area of my foot - I would be willing to bet your pain would at least partially be covered.

Read the other posts around here to get a feel of what it is like. Ultimately you have to be comfortable both mentally and physically to move forward on the decision to try an SCS.

tailam08 · 09-04-2012, 01:46 PM

Quote:

Originally Posted by Elysium1973

Hello all. New to these forums.
I had an L5-S1 microdiscectomy in may 2011 and at first had total numbness in the left foot. Since, the feeling has returned in the form of constant burning pain and allodynia. When I was with my first PM, he did 2 epidural steroid injections that were supposed to help break down the scar tissue at the S1 nerve root. He performed two and then decided it was time for an SCS trial. At that time I was only on Percocet 10/325 and cymbalta 60mg.
I went to see my neurosurgeon for a second opinion and he said it was way too early to think about doing that and referred me to another PM doc for more medication management. Incidentally, this new PM was the old PM's partner! We live in a small community so everyone kind of knows everybody else.
Anyway, I'm now on Perc 10/325, Lyrica 600mg, and Cymbalta 60mg. He did a sympathetic nerve block that was successful for two days and now the pain is back even worse. Not sure if I'm dealing with CRPS or sympathetically mediated neuropathic pain. Regardless, my question is:

1) do you think it's worthwhile to do the SCS trial?
2) do you think it's worthwhile to do a pain pump trial?

Incidentally, the whole idea behind the SCS is to get "a young person like me" off all narcotics. I'm 39. They also said they wouldn't give me any pain meds for breakthrough pain after getting the SCS put in. If I get the pain pump put in, they told me they would put in lidocaine and clonidine, but nothing else (this is the first PM). The second PM told me he wouldn't put a pain pump inside me, period. He would only consider an SCS if I totally failed everything else.

Very confused.

I too had a SCS implanted and was very happy with the result. From what I was told, the pain pump is only used as the last resort, when everything else, including the SCS, failed to relieve the pain. Like everyone else said, it is important to find a doctor that really care for you. I had my SCS done with Dr. Morar at the Dayton Interventional Radiology in Dayton, OH. He is very friendly and knowledgable. You can give his office a call. Overall, I was very satisfied with my SCS. Hope this help! Take care.

Rrae · 09-05-2012, 01:12 AM

Quote:

Originally Posted by tailam08

I too had a SCS implanted and was very happy with the result. From what I was told, the pain pump is only used as the last resort, when everything else, including the SCS, failed to relieve the pain. Like everyone else said, it is important to find a doctor that really care for you. I had my SCS done with Dr. Morar at the Dayton Interventional Radiology in Dayton, OH. He is very friendly and knowledgable. You can give his office a call. Overall, I was very satisfied with my SCS. Hope this help! Take care.

Welcome!

Thank you for sharing this! I'm glad you've had a good outcome with your SCS.

Glad you found us! Feel free to stick around.
How long have you had your unit?

Rae

tailam08 · 09-06-2012, 11:37 AM

Quote:

Originally Posted by Rrae

Welcome!

Thank you for sharing this! I'm glad you've had a good outcome with your SCS.

Glad you found us! Feel free to stick around.
How long have you had your unit?

Rae

Rrae,
I have had the unit for almost a year now. Haven't had any problem yet and felt so much better. I hope it continue to work for a long time.

Mark56 · 09-06-2012, 02:24 PM

Congratulations on the favorable success with your SCS!!!! May you feel that benefit for many many years to come!!

Blessings,
Mark56

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