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on the fence

queenjillybeanqqueenjillybean Posts: 46
edited 06/11/2012 - 8:47 AM in Spinal Cord Stimulation
well, i am finally seriously looking at SCS... i have a CT scan scheduled for this week, an EMG later this month, and i was sent home from this month's PM appointment with a packet and DVD about the SCS... basically, since i am looking at a lifetime of PM, and having been on same dosage of meds for a year with no increase...MY greatest expectation or hope is that if i can stay at this dosage with no increases for a few more years, then i will be happy... i do not expect to be pain free...
My greatest fear that would prevent me from doing the trial is the idea of reducing my meds prior to or during the trial... my meds barely are enough as it is...and there is NO WAY i can deal with reducing or detoxing from my meds and the increased pain during the trial. I am THE engine that pulls the train of a very high pressure/ high volume business that i own- and NO WAY am i able to or willing to risk losing it... i have had seven surgeries, two of them 360 degree fusions with 8 week recoveries IN BED- and my client never even knew about it- i worked from bed the entire time...
Nowhere in the literature that i received does it mention reducing or removing pain meds- but after reading other posts on this forum, i am suddenly having serious doubts... i am sure that it all depends on the PM Dr and their protocol, and is something that i will need to discuss with him...but as my fellow PM patients are fully aware, that is a sticky subject as well...
Pain Management can be so exhausting...
My other concern is the post-op pain after the implant?? It seems to me that patients on long term PM would need an increase for post-op pain?
any input from personal experience is greatly appreciated...


  • I would definitely check with the PM doc about the current and pretrial pain meds. As you read, it varies from PM doc to PM doc. Basically my doc was of the mindset that we wouldn't be trying an SCS if my pain meds could handle my pain effectively. So I remained on the same meds for the trial. Now keep in mind that I had been detoxed off of opioids prior to this and was only on anti-seizure, anti-inflammatory and muscle relaxers. He said that his protocol was the same regardless of what a patient was taking. My post op pain was easily managed with the same meds, plus Tylenol and some ice packs. I've had two revisions and still had no problem managing post op pain. One thing the doc initially wanted me to do is consent to using opioids for a few days post op, but I opted to try without and am glad I did. So he knows that as with any surgery, a patient may need a short term increase in meds to manage post op pain.

    Of course there are many variables in all of this. What level the implant is targeting, the type of lead or leads used, the patient's overall health and fitness going into the surgery ... many things.

    I found that making a list of pros and cons really helped me put things into perspective. I did one up for the SCS and I did one up for just continuing on pain meds. It also helped me show things to my husband so that he could better understand whatever decision I made.

    Also most of the SCS Manufacturers have created Ambassador programs where you can be given the information to contact someone in your local area and speak to them about their experience. Ask your doc what brand of SCS he anticipates using and then look up that Manufacturer's website.

    Of course ask as many questions here as you need to and we will all do our best to help answer them for you.

  • Hi Queenjllybean,
    I was on the fence for about a year.
    I had been what I call a "yes" girl since day one of my debilitating back pain issues beginning. I was desperate to be out of pain and had every procedure that was proposed to me done.
    With the SCS, I took my time in making my decision.
    I talked it over with friends, family, my pain psychologist and waited until I knew it was right for me. Even after an additional injury to the thoracic area of my spine (ouch!) I still waited.
    I also utilized the ambassador program through the manufacturer of the stim that I am having a trial for this coming week.
    My pain management doctor and I are not changing my medication regimen pre trial or during the trial. I was concerned about this as well and felt much better about going through the trial after we had the conversation about medication. I too, get by on as little as possible and could not imagine being in more pain and having to take less medication.
    Hope this helps a little....

  • The SCS was suggested to me over 1 yr ago and I am still riding the fence. On bad days I am like - yes lets do this - then on good days I am like - why mess with the degree of success i currently have -.

    I have read miracle stories of success and horror stories of failure - it is not an easy decision to make. It is of no help to me that my sister is one of the horrible failure of a SCS :( HOWEVER to be fair - she did slip and fall and something got ripped out inside her which was missed by er Drs for several weeks - so her story is not of the typical.

    I still may one day make the yes decision.

    Take your time, talk to as many people as you can, research it to death and back again.

    Please keep us updated :)

    PS: I myself am self employed and applaud you for keeping your biz going - mine is all but dead. I just can't seem to pull it together any more with doing all I need/want to do to keep it going........sigh

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • thanks to all for your feedback... i was given information and phone numbers as to the ambassador program as well, which i will definitely take advantage of all of the available resources...
    after spending all of my adult life with spine issues/ surgeries i am not really afraid of the SCS in itself, but as i stated in OP- my fear is having my meds messed with... :)
  • 2 hours before surgery. MY pm never said decrease or stop my pain meds. I was also told not to drink or eat anything after midinght. c'mon At 6 am I injectd 6 unites of levimere (for diabetes)and drank tea, till I went in the surgery center. The nurse said wernt you told not to eat or drink, YEP, I took my shot, Ive had gastric bypass, and my piece of toast has long since past. I know they do this because some people would go to IHOP pug out and then puke their guts out in the or then they have to worry about choking... sorry I got off track. If your pain med dont control the pain taking them obviously yor gonna know when they hit the spot. MY normal was 4-5 10/325 hydrocodone daily, durring the trial I was able to only get by with 2 pills a day, and thats because Ive been on them for 2 years. And like you said there was no way in hell I was going to stop them, I hope the NS doesnt require it, cause I dont think I can stop or wean and be in all thei pain. AS my pm told me the older I get the more meds it will take to control the pain, and thats where people get the fentenal patches morphine patches, oxycotin...Those 3 days of scs trial I found the old me from 3 years ago, I ws able to stay up from 7 am until 11pm normaly up 8 am nap 1-4 then bed 7pm. I would deffinatly consider scs, many have you do a psych eval b4 the trial but maybe some dont. for me the pain was to the point I had NO LIFE, I hurt too bad. I see the NS tomorrow for his eval and then ins approval, for me this is a God send you may be able to hang on a few more years if your young, IM 51 and feel like im 90 with no life. Good luck to you keep us posted. Rosemary
  • ...but I got off after e-mailing one of the St. Jude Patient Ambassadors and doing a LOT of online research. And my PMD didn't want, much less require, me to go off my pain meds for the trial. In fact, I didn't start weaning off the 10 mg of methadone/day that I've been on for the last 12+ years until about 8 weeks after my surgery. And I'm still taking 2.5 mg/day, because I keep getting twitchy legs when I try to quit completely. (It's not restless leg syndrome, apparently -- we haven't figured out what but that has been ruled out.) The Withdrawal Diet has allowed me to lose 12 of the [ahem] pounds I need to lose, but it's a heck of a way to do it ...
    Anyway, I may be one of the "lucky" ones, but I tell everyone who asks that I consider the SCS a miracle. I hope that, if you decide to have the surgery, it works equally well for you!
    Best of luck --
  • backpainzz said:
    I know they do this because some people would go to IHOP pug out and then puke their guts out in the or then they have to worry about choking... sorry I got off track.
    No, they do it because the medications they use during procedure cause the muscles that protect your airway to stop functioning properly. Without those muscles working properly, there's nothing to stop fluid and/or food from going into your lungs and causing a life-threatening case of aspiration pneumonia.

    You're really, really lucky they didn't send you packing until you could follow instructions.
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