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Taking Narcotics During an SCS Trial

patwhite101ppatwhite101 Posts: 1,213
edited 06/11/2012 - 8:38 AM in Spinal Cord Stimulation
I reacently started a thread on having my SCS(spinal cord stimulator) removed.(It does nothing for my pain)
In that other thread I mentioned I was still on high doses of pain meds during my trial. I was on ER (extended release) and IR(instant release) pain meds.
Someone wanted to know why I always mention this when I say anything about my stimulator.
MY PM wants ALL his SCS trial patients off ALL pain meds during their trial, something he failed to tell me before my trial. The reason for this...How do you know just how much the stimulator is helping your pain if you are still on pain meds?? That makes perfect sense to me and still does. For the trial to be a success you should recieve a 50% reduction or more in your pain.
I am now on 15 mg IR meds. Much than less than what I was taking during my trial. The stimulator does nothing for my pain...nothing. And I really need the help of the stimulator.

In the book that came with my trial package ANS recommends you not be on narcotics during your trial. But It's up to your PM as to what he wants you to do. All PM's are not the same and do not do their trials the way my PM does.
Did the fact that I was still on high doses of narcotics alter the outcome of mt trial?? I feel it did and so does my PM. He admits it was his mistake for not weaning me off the narcotics before my trial. He said he did not know i was on high doses of meds...but he did.
I can not speak for any other PM or anyone elses trial. Perhaps I am one of those that has a good trial but the permanent implant failed me. That can and does happen.

I am happy for those of you the stimulator helps. Who would not be happy for something that reduces your pain by half. We will all still be in some pain and still on pain meds.
I will be seeing a new PM about a pain pump implant and I prey this works for me. It is my last resort. Please keep your fingers crossed for me.
I am only exprssing MY opinion about MY trial. I can't speak for anyone else or any other PM.
I am very happy for those of you who were able to cut their pain meds by half because of the stimulator.
Do any of you think all narcotics should be stopped during your SCS trial as my PM does? If you did not stop all your pain meds...how did you know the stimulator reduced your pain by 50% or more? Or were you just happy to get SOME help from your stimulator?
Sorry for this looooong comment.I have gone on to long now.
Patsy W :H



  • That is a good question you are presenting. It would be easier to find out if doctors followed the same protocol but like you know, some let you stay on your regular dose of meds while others make you cut back or eliminate pain meds altogether.

    It's hard to say in my opinion if the fact that you were on ER and IR meds altered the effect of your stim trial. I just believe that the pain will be front and center no matter how your doctor chooses to proceed. That's just my humble opinion but I think that maybe they don't want to cause additional suffering by having someone go through withdrawal. I would like to know what PM doctors think about this and whether or not it makes a difference.

    Thank you for sharing your experiences with the stim and I'm sorry it didn't go as planned. I have learned a lot from what you've said and I'm sure others have and they appreciate you for it. Take care :H
  • I didn't wean off my meds prior to my trial. For me, that would not have been a prudent choice. Furthermore, my pain is not defined by one thing. I have pain in the following areas:
    • Deep Hard Pain in ankles
    • Burning / Stinging on the surface of ankles
    • Burning / Stinging on the top of my feet
    • Burning / Stinging on the bottom of my feet
    • Tender Foot when I walk
    • Muscle spasms in both legs and feet
    Now did I get 50% reduction in all my pain? No, but I did get good relief from Burning / Stinging stuff and some relief from the Tender Foot. However, it provided little relief, if any for the hard pain. The meds I take only help the hard pain. Without the meds, I can not function.

    The way I see it, your meds are probably not reaching all of your pain. Why even consider an SCS if the meds are already working for you? If the stim is able to drop the levels down a few notches during the trial, then you probably can call it a success.

    Just my two cents worth.

  • Thank you for your comment and for taking the time to wade through my looooong comment.(Sorry about that)
    I do hope people will now understand why i always mention my high doses of meds during my trial.
    I understand why my PM wants all his patients off pain meds during the trial. How do you know just how much the stim is helping if you stay on your meds like I did?
    I think it will be interesting to hear how others feel about this and I wonder how many would have had the implant IF they were off all pain meds during their trial.
    Thanks meydey
    Patsy W :H
  • Thanks for the comment. I always enjoy reading your 2 cents worth.
    I know at first you felt the trial was a bust until you worked with your rep and that made a huge difference. I think that is GREAT and I am happy for you.
    I also agree with you....if you are getting some relief from the stim and you are happy with that, then go for it!! We all know we are going to still be on pain meds even after the implant anyway.
    Thank you for describing your pain and how the stim has helped you although you still have the "hard" pain.
    Patsy W :H

  • Since Pain management is a unique and individual thing to each patient, the PM doc should be tuned in to exactly what type of pain and how effectively or not it is being treated.

    Since for most, the SCS is considered to be one of the tools of last resort, that typically means that medication therapy is also failing for the patient. If a patient is being effectively treated with medication, whether it be narcotic, narcotic like, anti-seizure, anti-depressant or anti-inflammatory, then unless there are extreme extenuating circumstances, there should be no need or call for opting to try SCS pain management.

    So based on the above premise, it would not be necessary nor smart to remove the pain medications prior to the trial. Due to the length of time it takes the body to recover from the removal or reduction of most medications, it would add a heightened sensitivity to pain during the trial. This is also seen once the trial stim has been removed and most patients report not only a return of their previous pain, but a 10 fold increase.

    Doctors treat patients based off of established guidelines and personal experience. If one doc feels it is important to remove or reduce pain medication prior to an SCS trial, that is his personal prerogative.

    So it boils down to the doctor/patient relationship and what, determined between the two of them, will produce the most accurate results for that individual for during the SCS trial.

    If my pain could simply be managed by a blend of medications, I certainly would not want to have an SCS.

  • Just for clarity sake, I didn't ask why you always mention it. My exact post was:
    BionicWoman said:
    Patsy -

    Obviously this a personal question that you don't have to answer, but you keep referring to it, so I keep wondering...

    What meds/doses were you on before/during your SCS trial?
    You've been willing to share your post-implant drugs/doses pretty freely. It just seems like knowing the "before" part of the equation would put things into context.
  • You are mistaken dear. I did not have your comment in mind at all when I wrote this post.
    There was nothing to clarify. Sorry you took it the wrong way.
    Patsy W
  • Heh. That's ok. Someone was kind enough to point out the answer to me.
  • Thamk you "C" for the well thought out comment.

    I am like you....I would much rather have my pain managed by oral medication than be burdened with any implant.
    Patsy :H
  • I think it's great that you would rather have your pain managed by oral meds rather than an implant.

    Here's my confusion though. You feel that because you were still on your previous level of oral meds during your trial, those meds altered the results of your trial and you say that your doctor concurs with this thought. At the time of your trial you claimed that it was a great success and you posted that you were up doing things that you hadn't in a long time.

    So if you are having the SCS removed because it is not helping and the trial was deemed a success not because of the SCS, but the oral meds you were on, why would you turn around and risk all the possible complications and risks inherent with an infusion pump?

    Infusion pumps are larger and heavier than SCS IPG's. There are far more hazards associated with infusion pumps, including risk of death from over-dose. Replacement of the pump approximately every 4 years with an average of 500 pump refill injections during those 4 years. This list goes on and is quite large.

    Was there another reason why your doc recommended an infusion pump? I understand that your current level of meds is inadequate for treating your pain, but if a previous dose worked, why jump to risking so much?

    I'm just trying to keep this on track in case others who are being offered an infusion pump trial are reading.

  • Hi "C" and Patsy,

    This is another very good post, "C".

    Patsy has told all of us that she is very willing to be treated with oral medication, and she once again has expressed this fact in this thread.

    What really puzzles me, is why Patsy has not been prescribed her previous dose (before SCS implant) of ER and IR medications? I just don't understand what the doctor is thinking. As you stated, her previous medications worked well in conjunction with the SCS trial. Because Patsy was not getting adequate pain relief with the SCS and the low dose of medication she has been prescribed... why not return her to the previous dose of ER and IR medications, or even up her doses if need be?

    Why would a doctor keep her on such a low dose of medication, particularly if the SCS is not being used and is now going to be removed?

    Patsy has stated that she had to go off of her present medication for a few days, due to severe swelling. Hello? There are other pain medications she could try which may help her pain and stop the swelling.

    Patsy now has a bad shoulder and also needs knee surgery. These are two separate pains she has to battle with, outside of her "regular" chronic pain.

    I will never understand this, because there is no logic to any of it.

    I really hope this new doctor will be more compassionate and educated about pain management.

  • Hi "C"...To answer your question. My PM said that a pain pump was what I needed to control my pain. He did not recommend going back on such high doses of pain medication. Now this is just his opinion. I did not ask for a pain pump.
    This new PM I am seeing this week may be of a different opinion and try oral medication first. I do not know yet.

    Hi Tammy....My GP, who is treating my pain, will not put me back on the high doses of meds I was on before. He fears writing scripts for such high doses. He said he had never before treated anyone with such high doses of pain meds. He will NOT change my meds.

    I see my Bone&Joint Doctor tomorrow about my knee and my shoulder and hope the injections will ease that pain for a while. I am putting off the knee replacement surgery as long as I can. I just can't take the added pain of that kind of surgery right now. First and foremost I must get this throbbing, pounding pain in my feet and legs down to a level I can live with.

    I do hope I have answered your questions. Right now i am in a great deal of pain and may be talking gibberish. This has been a very, very rough week.

    I would like to add...like "C" said. If your pain is being controlled by oral pain medication I would not have an implant of ANY kind. They both come with high risks. With the SCS you could be paralyzed. Rare but it has happened.

    I forgot to add that what I am now doing to try to keep most of the swelling down in my legs is to lay every afternoon with my legs elevated for an hour or two. I just CAN'T, I CAN'T do without my pain meds again like that.It was a nightmare, pain was savage!! I do not have withdrawal problems like some do....all I feel is the full force of my pain. Fluid pills are of no help. And it IS the medication causing the swelling. I also sleep with my legs elevated. And I have those knee high socks to wear that are supposed to help. My legs still swell!!

    Please everyone, just wish me luck and prey I get help soon with this pounding, throbbing pain in my feet and legs. I am at my wits end.
  • Dear Patsy,

    We absolutely... without a doubt... are praying for the very best help for you this week. I hope this new PM is an answer to many prayers and I'm glad you are getting injections to help the pain in your arm and knee tomorrow.

    When I hear how much pain you are in and the less than adequate care you receive from your current doctors... well, it's just not right in my opinion. You deserve better pain management care.

    You know how I can get sometimes... particularly when it comes to your doctors. I just needed to rant a little bit this morning. I truly am looking forward to you seeing this new PM... and so is the rest of our Spine-Health family.

    What day are you going to see the new PM? I don't have it marked on my calendar. I am so glad the appointment is almost here and look forward to hearing some good news for you.

    Hang in there and remember you have many people thinking of you.


    Tammy :)
  • Thamk you dear. We both are going through some very bad, bad times aren't we? I know you wish the best for me and at this point I really need to hear that.

    Days are very bad but I am keeping my spirits up. I still have hope that some Doctor will step up to the plate and help me.
    I truly do not was another implant but if that is what it takes....then so be it Tammy.
    BTW I see the new PM Wenesday. Please hope he has some good news for me.
    I am off to see the Bone&Joint Doctor this morning.
    I know his injections help although I do not know what he will do about my shoulder. My arm bone has dropped down in the shoulder socket. Sheesh...

    Patsy :H

  • I always hope for the best for you. I would think the swelling in your legs alone may be reason enough to try the pump. I really don't have much knowledge of the medicines you have been on or are on.

    I know that in locals were the doc selection is thin, we often get differing treatment than what would be optimum or done in larger cities.

    Let's hope this doc has a firm grasp on a plan once he sees you. I also know that my PCP was willing to write scripts when my PM was backing me/him up. Not that the PM would write them himself :(
  • Thank you Wrambler. I know you always wish the best for me as I do for you.
    I also know you understand my situation here with Doctors or lack of good Doctors.

    I saw my Bone&Joint Doctor today. Had a cortisone injection in my knee and my shoulder. OUCH....the one in my shoulder HURT and it is still throbbing all the way down to my hand. But I think this pain was caused by the way he manipulated my arm. He said my shoulder is "frozen" and also gave me a series of exercises to do. I will start on them tomorrow.
    Wed. I see the new PM. Will update all.

    Thank you again Wrambler and everyone.I am off to bed!!

    Patsy :H
  • Woke up this morning and NO shoulder or knee pain!!
    The corisone worked it's magic!!
    i went to the Bone&Joint Doctor yesterday and had an injection in my knee and right shoulder and like magic the pain is gone!

    I see the new PM tomorrow.
    Wouldn't it be wonderful if he tells me he will help with my foot and leg pain?
    Wish me luck everyone.
    Patsy W :H
  • I would like to add something here on the risks of a pain pump implant and risks of an SCS implant.
    Both procedures come with serious risks just like any surgery.
    "C" you knew the risks involved with the stimulator didn't you? You could have been paralyzed, you could have developed a life threatning infection like Jim(a memeber here on SH) did. He is lucky to be alive today. Leads break, and there are a number of adverse effects that can crop up with the stimulator. Batterys can leak.
    Yet you went ahead and had the implant just as I did. WHY....because we were offered something that may help ease our pain. Yours works for you. Mine does not. I really do not know why...all I have for an explanation is what my PM told me. That was HIS reason....not mine. All I said was that made sense to me and still does because that was what I was told.
    Yes..there are risks involved with the pain pump. I know those risks. Yes, if this new PM says that is what I need to stop this pounding, throbbing pain in my feet and legs I will take the chance. Anyone would...just as you would. They are proven to work and have been in use since 1979. People who have them say it is the best thing they could have done. They love them. They gave them their life back. Sure they come with responsibilities just as the stimulator does. Sure the can have problems just as the stimulator can have problems. Even taking oral medications come with risks but we take them every day don't we? Because we can't live with our pain we take them. No one likes to take the risks that we all with chronic pain take every day but what would our leves be like without them? We would have no life.
    I have no life now because of the pounding throbbing pain in my feet and legs. I can't do my own shopping, I can't even go out to dinner. My life is..I can't...I can't because of this pain.

    YES, YES "C" I WILL take the chance of having a life again.

    Patsy W
  • I'm so glad those worked for you! I had 3 different shoulder injections, 2 in the shoulder joint and one up high where the collarbone rests at the shoulder.
    I agree completely, D@#! those hurt! I never watch injections as I tend to blackout if I see the needle stick. My wife was there and said, "wow, that was a big needle"!
    Let's hope the cortisone really lasts. My M-I-L had some kind of lubricant injected into one of her knees that lasted for a long-long time. I know it wasn't cortisone, but maybe ask about it next time you see the bone&Joint doc.

    Again, great news those shots helped! Don't Overdo it though!
  • It's so good to hear the cortisone shot helped your shoulder and knee pain. Any relief is good relief.

    Well, it's up to the doctor when and how he wants to proceed when it comes to treatment options. Some will have you try all kinds of meds until you run out of options, while other doctors will present you the option of having a more invasive type of procedure right away. It can start with epidural injections and it can lead up to a discussion about neurostimulators.

    I have heard that the pump is offered usually when the stim hasn't worked out, so it falls under last resort. I'm also fully aware of all the risk that comes along with having a pump and the doctor thinks that the benefits outweigh everything else. Of course it first has to be deemed appropriate according to your case and also if you are a suitable candidate.

    I also agree that other treatments should be exhausted first before contemplating such invasive treatment. It is certainly not an easy decision to make.

    Whatever happens I know that you'll decide what is right for you and I hope your new doctor is wise and well qualified to do this for you. Please keep us posted on how things go for you and remember that we all want the best for you. Take care O:)
  • Hi Patsy,

    Great news about the injections taking away your pain. Very nice to hear.

    You've been on my mind all morning. I am anxious to hear how your visit went with the new doctor today.

    Please let us know when you get a chance.

    Hope you received some good news and you liked this doctor.


    P.S. I haven't had a chance to read or answer any of my PM's yet, as I had two extractions done yesterday morning (abcessed molar and impacted wisdom tooth that was also infected). They scheduled my surgery really quickly, but I'm home and doing pretty good... just a bit sore and tired.
  • Yes....my visit went really well with my new PM today. I go back in Dec. for an MRI AFTER I get this stimulator removed and he will work up a plan for me after he sees the new MRI. I liked hem.
    It was wonderful to wake up Tuesday and not have any aganozing pain in my shoulder. The cortesone worked it's magic over night. That darned Bursitis is sooooo painful.
    Oh my...2 extractions!! I know you feel as rotten as I do right now.
    I am beat!! Long round trip today!
    Thank you Tammy >:D<
    Patsy W
  • Patsy,

    One of my biggest personal concerns is someone committing to any type of permanent implant without weighing the risks vs the benefits. You already know from first hand experience, that docs try and focus your attention on the positive aspects of living with an implant and what it can do FOR you. They don't like to spend nearly the same amount of energy helping you assess the risks and how this can and may make your life even worse.

    The problem with us as patients, that you so clearly pointed out, is our desire to alleviate some if not all of the pain we suffer. This causes many to put on blinders and to have selective hearing or selective memory. So much of what we should be hearing and assessing, goes unseen or unheard.
    patwhite101 said:
    "C" you knew the risks involved with the stimulator didn't you? You could have been paralyzed, you could have developed a life threatning infection
    Yes I studied the risks and assessed how this could and would impact my life. Since all the spine surgery I have had carries the same risks and more, it wasn't a difficult assessment, however it still wasn't an easy decision.
    patwhite101 said:
    Yet you went ahead and had the implant just as I did. WHY....
    I went ahead with the implant based on a successful trial and a lack of any other current options.
    patwhite101 said:
    Yes..there are risks involved with the pain pump. I know those risks.
    Patsy, I pray that you know all of them and understand what they are and how tremendously different those risks are from the risks associated with Spinal Cord Stimulation.
    Adverse Events: Include, but are not limited to, cessation of therapy due to end of device service life or component failure, change in flow performance due to component
    failure, inability to program the device due to programmer failure, CAP component failure; inaccessible refill port due to inverted pump, pocket seroma, hematoma,
    erosion, infection, post-lumbar puncture (spinal headache), CSF leak, radiculitis, arachnoiditis, bleeding, spinal cord damage, meningitis (intrathecal applications), anesthesia
    complications, damage to the pump, catheter and catheter access system due to improper handling and filling before, during, or after implantation; change in catheter
    performance due to catheter kinking, disconnection, leakage, breakage, occlusion, dislodgement, migration, or catheter fibrosis; body rejection phenomena, surgical
    replacement of pump or catheter due to complications; local and systemic drug toxicity and related side effects, complications due to use of unapproved drugs and/or not
    using drugs in accordance with drug labeling, or inflammatory mass at the tip of the catheter in patients receiving intraspinal morphine or other opioid drugs.
    patwhite101 said:
    Sure they come with responsibilities just as the stimulator does.
    The responsibilities that come along with infusion pump systems are far greater than those of an SCS. Depending on the delivery method and dose, the pump will have to be refilled on a schedule or withdrawl can occur. A specific support system has to be available in your area and the ER needs to be capable of emergency procedures associated with the infusion pump, or overdose and death become a big reality. Avoiding extreme temperature and pressure changes is necessary to avoid having the pump infuse either too little or too much.
    patwhite101 said:
    Sure the can have problems just as the stimulator can have problems.
    Infusion pumps have a far greater number of potential problems and the part that worries me the most is that these problems can so easily lead to drug overdose. Depending on where the person is at the time of system failure, EMS may not have sufficient time to respond.

    I personally see infusion pumps as something so incredibly dangerous and restrictive. Spinal cord stimulation on the other hand has far fewer risks, does not require specialized support in the ER or from EMS (respiratory support and someone who knows how to drain a pump in an emergency).

    I can charge my IPG, and go camping for several weeks without taking my life into my own hands or placing that burden of risk on those around me. An individual with an infusion pump risks death in the event of certain system failures that cannot be taken care of by simply shutting off the pump.

    Patsy, just make sure you read the entire label, before you buy into something new and exciting. I'm glad that between all of your docs, someone is trying to help you out and wanting to treat your pain. No one could ask for anything more.

    All the best,


  • Yes..I know all the risks with the pain pump dear.
    My new PM is NOT going to jump in an implant a pain pump without trying everything else first. As we all know IT IS a last resort. I would never agree to it anyway unless nothing else works for me. And this Doctor is going to work with me and I am so happy of that. He has agreed that we will exaust all possibilities BEFORE resorting to a pain pump! That is the last thing he or I want.

    I have been up since 2:35AM in pain and now it has settled down a bit. It is now 8:22AM and I am going back to bed and try to get more sleep. So goes the life of a person in chronic pain.
    Wish me luck with my mew PM folks.
    Patsy W
  • Hi Patsy,

    I'm glad to hear you had a good visit with your new PM today. We were hoping you would like this new doctor.

    Will your new doctor be taking over your pain management care once you have healed from your surgery or during your healing process?

    How long is your recovery from the surgery? Is this surgery done out-patient or will you need to be in the hospital a few days?

    I'm glad all went well and hope you can get started with your new pain management care before the new year.

  • Not to play Captain Obvious or anything, but weren't all of the possibilities exhausted before resorting to the SCS?

  • NO...the one thing I would not discuss was more surgery as a possibility for releaving my pain. (Other than the surgery for implanting the SCS.)
    I do not know what good more sugery would do so I told my PM I was not interested in discussing more surgery.
    I do not know what good it would do to remove the scar tissue that is causing my pain. It creates more scar tissue.
    Patsy w :H
  • My Mom has the pain pump and we are still in the "infancy stage"... Still adjusting UP on the meds, tweaking here and there...

    C posted great information relative to the responsibilities that come along with infusion pump systems and one in particular came to light for my Mom here recently. Specifically: "Avoiding extreme temperature and pressure changes is necessary to avoid having the pump infuse either too little or too much."

    She's been participating in physical therapy for a few weeks. She mentioned being sore and the therapist stated she could use cold compresses, but stay away from heat because it would affect the medication being pumped... I thought that was an odd statement because the pump is on a timer; not like the patches that basically have no controlled infusion mechanisms.

    So I asked the doctor yesterday if it was ok for her to use heat. He said yes. Basically what I was thinking that it is on a timer yada yada.

    HOWEVER, ladies and gents - it is always better to err on the side of caution. I told my Mom if she felt like she needed heat, no more than 15 minutes (as opposed to the 8 hour Therma Care heat patches or a heating pad).

    Well, I hope everyone has some pain free moments today. Hopefully they are all strung together so you can enjoy your day!

  • Oh Yes...I am very pleased with my new PM. But this was just my first visit. I go back in Dec for a new MRI and then see where we go from there.
    He is taking over my pain management after the stimulator is removed.
    I assume you are asking about the surgery required for it's removal? That is an out patient procudure and I go home that day. The removal is easy. Will go much faster than implanting it.
    My new PM wants to see what, if anything, is going on since my spinal fusion in '95. I have not had an MRI on my spine since then.

    Oh Tammy, it has been such a roller coster ride trying to get this savage pain in my feet and legs under control. Who would have thought managing pain would take so long and be so difficult?
    It has been several years now and I am STILL in constant pain!!
    Thanks for the comment Tammy
    Patsy W
  • Thank you for the information on your Mothers pain pump.
    ANY implant is a huge responsibility and they both come with risks. I would not advise anyone to take any implant lightly and if your pain is being controled by medication I would not even consider any implant.

    But this is just my opinion. We each have to do what we believe is right for ourselves. No one else is walking in our shoes.

    Best of luck to all
    Patsy W :H
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