Thoughts on SCS
 

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 am confused with youuuuuuuuuuu
how is a person to trust a doctor
i'm sorry
my status is where pain pump
was recommended
my experience and not
trusting 2 failed surgeries
ACDF 5/6-6/7 PLATE 6 SCREWS
PCDF DONOR BONE AGAIN AND CAGE
MY PAIN AND ADDED COMPLICATION
WITH SOMEONE I TRUSTED
CANNOT DO ANY MORE DO OVERS
now i started with a new team
monday emg new doctors
was left for the birds
hoping for answers

someone who cares

Elys
 

Please read this in small bites- http://neurotalk.psychcentral.com/th...7854.html:hug:

Fwiw
 

I too had Neuro surgery that "went wrong" I.e. failed back surgery and it's left me with drop foot in my lower left leg. I feel no pain howevere, not even sciatic pain which still shoots from my hips down my left leg.

The scs .. Finally, worked for me, but the pain is still there, it's just like someone is massaging your temples when you have a stinker of a headache.

Sadly I had to lose all my wires, paddle lead and battery due to infection, but saw my Neuro surgeon last week who says he will give it another try. Trouble is, there is so much scar tissue on my back he may not be able to do the op.

Fingers crossed,. And for you too ... Loads of people's stories to read on here so settle yourself down and have a good read.

Hello Elysium!
 

Welcome to the forum! :hug:

I'm sorry you are dealing with this frustrating pain.
I gotta be honest and go with my initial gut on this....something doesn't 'smell' right here. Number 1 - these Drs seem to be wanting to push these VERY expensive units on you way too soon. They get paid a very generous kickback on these.... and Number 2 - they don't seem genuinely interested whatsoever in your longterm pain management. The way they are putting these strict restrictions right up front (re: no pain meds whatsoever for breakthru) pretty much spells that out. SCS's are guaranteed to only give 50% of pain reduction.
They want to stick this in you and send you on your way. That's also the reason the one doc doesn't wanna mess with the pain pump. They require very close monitoring and monthly refills, which he doesn't want to commit to.

To me, it looks like these guys are treating you like a teenager, with no respect for you as an adult. You're almost 40 years old. I understand them wanting you to get off the meds. That's what getting the SCS is all about, but 'most' people still need some sort of breakthru med and to cover the % that the SCS might not cover. There are those who do have success enough to not need the meds, but your doctors are prematurely laying down the 'rules'.

I agree with Andy, lots more research should be done. I can sure see why you are confused and I'm sure sorry about this. I feel badly that you are being put in this position. Almost looks like you are being 'cornered' :(

It's very possible that one of these units COULD help you. I hope you can get in with a doctor who really cares about your pain management and is willing to work with you and not pressure you one way or the other. At least your 2nd Dr is wanting to hold off on the SCS if/until all else fails.

These are just my thoughts.
Please stick around and get to know some of us. We truly care and you can get a real good idea what Scs's/Pain pumps are all about just by reading up on some of these testimonies.



Rae
:grouphug:

Thanks so much guys for your caring and thoughtful responses. You sa- aa aasummed it up exactly correctly: I do feel cornered. I don't feel emotionally ready for an SCS just yet. I feel like its a big emotional and physical and financial commitment that I'm not quite ready to take on. Hh Yes, this pain controls my life. It has taken away my life, for all intents and purposes. Between the back pain and the foot pain I am literally shut in my house. Not working right now. Yet I don't feel ready to give up just yet, as I'm only 5 months into my pain management journey.
Thanks again guys.

You nailed an important point there, Elysium - emotional readiness for this procedure. It took me several months to come to terms with the procedure and move on it. I was determined to try everything else first - chiropractics, acupuncture, PT, even natural anti-inflamitories (I can't take NSAIDs more than a couple times in a 24-hr period), etc. I seriously wanted something else to work!

I can't help but wonder, though, if I had found this forum sooner if perhaps I wouldn't have held off for so long. Seems when I would go look online for info about this procedure I would nearly always land on a site that was sponsored by one of the "Big 3" of SCS (Precision/Boston Scientific, St. Jude and Medtronic) and of course everything is so rosey when they present the info. I wanted hard facts from the patients standpoint and that's definitely what this forum has. Some folks have had great experiences, some just about disastrous...and everything in between.

Stick around, ask questions, read the posts and be educated about the various pain-control methods out there. Sorry to read of how bad you're suffering...and hope something is found that will provide some relief for you soon. You said "only 5 months" but 5 months of severe suffering can feel like a lifetime...especially since it's taken you down to the point of being home-bound...that's pretty rough.

I'll be sure to say an extra prayer for you...hang in there and know you have folks out here that really do care.
:grouphug:

No rush
 

Hi Elysium!

Welcome to a wonderful, supportive, helpful group! I'm kinda where you are right now, except that I did do the one-week trial and had pretty good results. Still, it's a big step to actually have the surgery, and I think you are very wise to wait and do some research first. Don't let any dr. talk you into something that you aren't sure about. After all, it's your body!! It is quite a commitment, and not one to be taken lightly.

I totally understand where you are, because I feel the same way, although I've had chronic back/leg pain for many years, in addition to fusion surgery and lots of other treatments. Haven't really decided one way or the other for sure, yet don't want pain to rule my life. Yikes! At least we are not in this thing alone, as there are many others probably feeling just as you and I both are right now. To me, it seems like your dr. is jumping the gun on this....after all, there are lots of other alternatives that they haven't even tried with you yet. I'm not even sure your insurance company would give the OK at this point, since they usually require a list of other interventions before even considering the SCS. So hang in there, read some of the others' experiences here when you have time, and I'll be praying for you as you make these decisions regarding your health. So glad you found us!

Take care,
Jan :hug:

Take your time
 

Wanted to chime in here with my 2 cents...

As has been said above - an SCS is a big commitment; both for you (physically and emotionally) and your pain doc. My pain doc likens an SCS to a "marriage" in that 1) She wants to get to know her patients first (both their pain as well as their life stresses and coping mechanisms) and 2) once she implants an SCS she is commited to you for life.

I will never forget my very first appointment with her. She spent over an hour with me, going over things I have tried, as well as all the things we could try to reduce my pain. At that time, none of my Drs (and certainly not myself) was convinced my pain was permanent...as I had a bunch of structural damage that we were attacking with sort of a reconstruction surgery first...when she mentioned the possibility of SCS down the road I thought she was crazy. Every appointment I had with her we always went over this list - and I still never saw myself with an SCS. After my foot reconstruction, when it was apparent that pain would be a permanent part of my life, I started to get pretty down and depressed...but this was still an option. Finally I got to a place mentally where I was ready to try it. I tried very hard to get my hopes up...because at that point I truly felt like I was trying the very last thing that could potentially lower my pain...and in the end it is the best thing I ever did - it has given me my life back. I am almost off all of my long-acting narcotics now...but still have breakthrough meds to get me through each day.

The point of the story is...you have to have complete trust in your pain doc, and be mentally prepared before you get to the point of an SCS trial. As others have said...your pain docs sound like they are only in it for the pay chekc...not for your quality of iife. PLEASE search to try and find a Dr that cares about you over his pocketbook. Then, once he knows you and you know him - will you be able to make a comprehensive plan of attack!

reaching out there for people who have had experience with scs
 

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

Hi Moira!
 

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

Hi Moira
 

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 :)

Dear Moira
 

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

can maybe relate...a little
 

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.

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.

Hello Tailam08!
 

Welcome! :hug:
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
:grouphug:

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. :winky:

Hello Tailam!!
 

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

Blessings,
Mark56:):)