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Only a 4 DAY trial and WHAT about the MEDS?! pardon the 'RANT'

RRraeRRRrae Posts: 85
edited 06/11/2012 - 8:40 AM in Spinal Cord Stimulation
OK I am frustrated and confused! AHHHHHH!
I came home a few hours ago with my trial leads in place
(L1,L2 i think) For ONE thing, the hospital surgical floor is very busy today (It was like a sureal bad dream from a rerun of "Scrubs"!) So I felt as tho i was very rushed.
The procedure went great (took 15 minutes - bam DONE) They wheel me into my little 'area', the Medtronics Rep handed me the equipment and a quick 'easy' guide on how to use it. Said he had another client waiting, so couldn't stay long....then my Pain Doc who placed the leads comes by and gives me some quick instructions mostly about the meds. He said to STOP the Fentanyl patch cold turkey! @) This is NOT the way he talked when we scheduled this deal!! Hardly anything was said about restrictions as far as the BLT's. All he said (wouldn't even let me FINISH a question!!) was -- the leads are taped down real good....just go and live your life....do the things you weren't able to do before the pain...!
Now I remember why i ran from this guy a year ago when this was first brought to my attention. This guy is cocky and seems to think "PAIN" isn't a reality. !! I wish HE could wear our shoes just for ONE Edited HOUR!!!
For ONE thing, my BACK hurts like Edited from the procedure....I'm already getting intestinal fortitude from the beginnings of what i presume to be withdrawal....! How in GODS name am i supposed to 'GO LIVE MY LIFE!!"
IN F O U R DAYS ?! I'm supposed to make a life-long drastic decision in 4 days.

I apologize for sounding this way, I'm sure you understand. I'm trying to remain calm and remember the feedback i've received so far....

Someone did say they were quite sore the 1st 2 days and by day three they were a whole new person. Maybe that'll be my case - i hope.
And Patsy WARNED me to turn my stim way down B4 laying down! Of course i remembered this AFTER i made the mistake of not doing so. :''(
But the medication thing MAN! There is NO way i'll be able to just 'throw away' my pain patches. THAT is NOT good advice AND it goes against what he told me during the consult a few wks ago.
Ok, i'll shut up. I'm just PO'd about the way the whole thing went. It's just another day and another dollar to these guys, but this is a LIFElong decision to me!
And only 4 days to decide. 4 days to wean thru all the different types of pain I'm dealing with ON TOP of the orginal condition. Gonna take a miracle from the looks of it.
I'm gonna take a sleeping pill and try to forget this day even occurred.
If i haven't scared off the entire forum, i'd really like a hand here. Cuz i sure ain't gettin it from the medical professionals.

Post edited by Authority Member haglandc for inappropriate language


  • Take a deep breath and relax. Your probably gonna be sore for a couple of days, then the tape will start to drive you nuts and .....

    How is the stimulator working so far? If it's not cutting it, call the Rep and demand a retuning session. Tell them you want to make an informed decision. I would also contact your Doctor first thing in the AM and ask him what gives. Tell him that you are confused with his instructions from yesterday compared to what he said 2 weeks ago. Calmly ask him to explain the change so you can feel comfortable in what is going on.

    Try not to get to upset. I hope the stimulator is working for you.


    P.S. Take a gandor at the SCS Trial FAQ's (http://www.spine-health.com/forum/spinal-cord-stimulation/scs-trial-faqs), I posted my take home instructions in the thread.
  • are real callus 84574rd5!! they think that after they have inserted there box of tricks that you will be out of pain ..well that's 80110k5 ! if you are on narcotics you will have to come off them gradually ..that's if you can ..from what i know {having talked to many with SCS } they still require there meds for a long time after and many are still on them now because there magic box is anything but magic!! i also know that there are many on hear that have had there magic box of trick removed as it caused more problems than it solved.
    i hope for you that it works but i think that coming off your meds is ill advised and i would seek another opinion .good luck my friend
  • Much appreciated. Your post actually DID calm me down pretty well :) And I will read thru the Trial FAQ's in the morning with a new mindset. I'll need to pull my head out of my a-- first of course :)
    Thank you
    Good Nite ...
  • I saw your post right B4 i logged off!
    It means alot!

    PS :) I like your use of cuss words ha

  • Have been thinking of you today.
    So you forgot and lay down with it going full blast!! Tut Tut I bet you do not do that again.LOL
    (I did the same thing)
    You will not go into withdrawl if you are still taking your break thru pain meds dear. Do not worry about that.(My Doc wanted me off ALL pain meds during my trial but forgot to tell me) He wants to see how much the stimulator is helping.
    A 4 day trial is normal but if you think you need longer tell your Doctor. I am sure he will let you keep it in longer.
    Relax dear and do not worry about withdrawal. You will be getting enough narcotics from break thru meds.(I have NEVER gone into withdrawal even when cutting out ALL pain meds) Lucky me huh?
    I am sure your Doctor feels that if the stim is working for you, you will not need the patch.
    Relax and concentrate on how much the stim is helping.
    Sleep well and let us hear from you tomorrow.
    Sending a hug >:D< and Pepper send a woof woof.
    Best of luck
    Patsy W
  • Rae, hope you had a good nights sleep. My first night home with the trial, I slept with it on and ended up getting a Princess and the Pee effect after I slept on the control unit :smile:" alt=":smile:" height="20" />.

    Tony is correct, some of us with a stimulator do not get to cut out the scripts. But for those of us who's condition is progressive, every little bit helps.

    I think its a right of passage to experience the over stimulation at least one time.

    You didn't answer my question, is it helping at all.

  • Listen to your body Rae. You know it better than anyone.
    You are going to be sore. Take your BT pain meds as needed. Also listen to your Doctor. All Doctors are different. One will say to continue your pain meds another will say not to. It all depends on your Doctor. He has a reason for asking you to stop the patch.
    I do hope you sleep well. Those long dangling coars pose a problem I know. I slept in a recliner.
    Relax dear and listen to your body. Concentrate on how your legs feel.
    Pepper sends a good scratch behind thr ear. She says that always makes her feel better.
    Patsy and Pepper
  • I had a three day trial and that was more than sufficient to show me it would help. I agree with Dave, that you should call your doc in the morning to ask for clarification. It is quite possible that he was thinking of something else when he talked about stopping the patch. It could have been a mis-communication.

    It is quite normal for the doc to tape you up and send you out the door telling you to go out and live life. The goal is to see how much the trial stimulator can assist you in doing normal every day things. If you do the trial and all you do is sit around or lounge around the entire time, it's not going to show you whether or not the SCS will give you back some mobility and normalcy in your life. It sounds like you have a doc that likes to over simplify things in hopes of reducing your stress.

    Sure you will be sore where the lead/s were inserted, but you should be able to tell if the stim is working on your normal every day pain. One of the things I did during my trial was shut the stim off for about 2 hours one evening. When I turned it back on, I realized just what a dramatic difference there was. Also talk to those around you, because they should notice a difference in you as well and they are a good way of judging just how much difference there seems to be in your step.

    Play with the settings a bit and if things don't seem right, contact the rep to get a few tweaks to the programming. It's your trial, make it work for you!

  • I went through a second SCS Trial about 3 weeks ago and it was very, very painful for me. You should be in constant contact with your Rep during your trial. I met with mine about 3 times before I had the leads pulled. I worked constantly with numerous different programs to try to get the stimulator to help my pain...all to no avail. If this is going to work for your pain, you will know soon. For me, I guess I knew right away it wasn't going to work, since this was my second trial and I was very familiar with the SCS, but I didn't give up and kept on trying all the different programs my Rep gave me. I kept in touch with him by phone, email and in person. I hope it works for you.
  • Everyone's experience is different. That's for sure! My trial procedure was performed in my doctor's office. It took about 1 1/2 - 2 hours and the doctor stayed present and adjusted the leads as the rep was programming. I was awake the whole time. I was told to "lay low" for two days. No driving, no bending, no anything. And I can honestly say I wouldn't have wanted to do anything those first 2 days. The 3rd day (I'm the one who felt so much better by day 3), I drove my car and went and met with the rep to do some adjustments. The next day, it came out. My pain management doctor only leaves them in for 4 days (Tues thru Fri in my case). I was ready to have a shower by that time. My entire back was covered in tape and for some reason, the placement of the trial leads caused me to perspire profusely under my arms and nothing would help. I was stinky! Thank goodness the permanent SCS has not given me the same side effect. Ha Ha!

    I definitely agree that you need to check back in with your doctor's office this morning. Perhaps a nurse can be the intermediary and get you a calmer, more reasonable response to your instructions. I would only do what you feel comfortable doing, but it would be good if you can experience the stimulator without pain being masked by the pain patch, at least for part of your trial, I would think.

    Good luck to you.
  • I was very touched to see these posts when i logged on.
    Every single one of these posts makes perfect sense. My emotions were in the 'raw' when i posted this thread and you were able to see thru my confusion, anger, and pain.

    Dave, yes - the tape is driving me mad!! BUT the stimulator IS masking the pain in both legs.
    Unfortunatly i only have 2 different programs to expieriment with and the rep is a 3hr drive away. This is the first day i was actually able to get out and do things. I also found it best to turn it off for several hours until i felt my original pain for awhile, then turn on the stim and it covers the pain. Only wish i had more programs to choose from cuz these 2 feel like it does when your leg goes to sleep and wakes up tingling. But i'm not complaining. It's all just so new and confusing.

    Thank you all for caring and giving input. I only hope to be able to help someday instead of being the one asking all the questions all the time...
    God Bless
  • Don't worry about having just two programs. I only had one during my trial. The goal is to evaluate whether the stimulator will work for you. I have 8 programs now and basically only use 4 of them. If it looks like it's gonna help, you can fine tune it later.

  • I'm beginning to see through the clouds now and have calmed down quite a bit. Come Monday though, I definately will call the doc and calmly demand better attention from the Rep.
    I turned the stim off and my legs hurt like HECK (hope that isn't inappropriate language :) )
    So will turn on the stim and be greatful.
    Thank you so much
    You always have the right things to say to people, even in the midst of your own battle !
  • No one can prepare you for how a stimulator feels.
    Give yourself time and you will get use to it.
    I am so happy it is helping to mask your pain.
    I know it's a shock at first. We always incorrectly think....but it will stop my pain. It's just a trade off....tingling instead of pain.
    Turning it off for a while is a great idea. It reminds you of what your pain is like.
    Sorry but I am not thinking clearly.
    Pain is very bad tonight.
    Patsy W
  • That's great news that the stimulator is helping with the pain in your legs! With a permanent implant and the right leads, the stimulator can do some pretty amazing things. It is very common for us to discover something is providing us some relief and have it feed the desire to gain more or better relief. Sometimes more can be achieved, sometimes not. So you have to make the decision as to whether what it does provide you is enough to make up for the risks and restrictions that a permanent implant will impose upon you.

    Enjoy the rest of your weekend.

  • Thank you 'C', Dave, Patsy, and everyone else for all the support. It means more than words can say to get caring responses to such a confusing time in life... I see that you are always there for all the new people who pass through the forums looking for help, support and caring.

    You all deserve a special <:P
    It's the 'un-sung heros' such as you that really make the world go round. I pray that you receive special blessings from God above for all the time you sacrifice helping others.
    God Bless
  • Thank you. We are just happy the stim is helping your pain.
    Patsy W
  • I'm glad things are settling down for you now. I was also surprised that the doctor had you stop 75mcg of Fentanyl cold turkey without giving you the heads up first. To me that is kind of a high dose to just stop like that but I am so relieved you seem to be doing fine. When I had my SCS trial long ago, I was on 25mcg Fentanyl patches along with Norco for BT pain and I was not told to stop or cut back anything. Of course this depends on your doctor and his belief on what he think is best. Anyway, hang in there sweetie...I know you can get through this and I hope the SCS works out. Take care
  • As fate would have it, the doc's office screwed up my follow up appt and i ended up getting 2 extra days with the trial.
    My family especially noticed a change for the better in me, mentally and otherwise.
    I'm sure I'll be pounding everyone with more Q's as time for the surgery nears. I've been reading other member's posts from their experiences and am taking notes. I'll try not to get so ridiculously 'Mental' next time ! :)
  • Shines on some! I know if I had a shorter trial I would not have been so willing to move forward.
    They really had my back sore and I did nothing from Wednesday till about Monday morning, then I did little things, On Tuesday I cleaned myself up and went into work with the trial in place. At that point I knew there was hope and agreed to a permanenet version.

    So glad to hear it worked for you.
  • Thanks for jumping aboard my "Rant" of a thread. I appreciate anyone who takes the time to share. I've been reading alot of posts, so am 'getting to know' a lot of you and Wrambler, you have a heart of Gold.

    My heart is heavy as i see you all have lost a wonderful friend, Susan. I am so sorry to be reading this news.
    This is the time for friends to pull together for support.
    I came to this forum just recently, so didn't have the opportunity to share in her struggle. I have read her posts and clearly see she was a wonderful friend to many here.

    Thank you all for helping me in my time of need and please accept my heartfelt sincerity in the loss of your truly special friend....

  • I'm glad the trial went well. Try and stay relaxed as you await your permanent implant, assuming you are moving forward. I will tell you that after my trial, I experienced an increased amount of discomfort. I put it down as my perception of everything had changed after the trial. So, if you sense things going down hill a little, take solace that you'll be on the right track soon.

  • See, I said you could do this =D> Way to go Rae <:P How soon will the surgery be? Can you estimate how much pain relief you had in the trial- 50,60,70, 80% or more? That would be so awesome. BTW, did you go back on Fentanyl? Please keep us posted and I'm so happy for you. Hugs, Meydey :H
  • My PM told me that if I can get off of Fentanyl 50McG
    from the SCS he has a medication to give me that keeps me from withdrawal. I don't remember the name. He NEVER believes in going cold turkey! I'm fortunate that he's a 1 person office with no PA. I switched to him for just that reason. I was tired of only dealing with PAs.
  • Dear RRae,
    I am sorry for the late reply, but just seriously just got on this site today. In reading your trial rant, I had exactly the same problem. Mine is for muscle spasms. Of course the 6 day trial was immersed in 5 days worth of taking pain pills (which normally help with the muscle spasms anyway). It was exactly as you said "too Edited short" to make a life long decision. I got railroaded into getting the Spinal Column Stimulators, and they didn't work anyway. It seemed like the people from Medtronic were there like vultures along with the doctors. If you can talk live please let me know.-Paul

    Post edited for inappropriate language by Authority Member haglandc
  • A stimulator is not going to do much for muscle spasms if the damage or compression to a nerve is the motor control nerves. Those nerves are on the anterior part of the spinal cord and will receive little to no electrical current. Second, the leads are usually placed above where damaged or compressed nerves are in an effort to either multiplex or override the pain signals being generated below the leads.

    I suffer from unrelenting muscle cramps in my legs on a daily basis. I take muscle relaxers to help lessen the blow from these cramps. Most of the time, I get by, but there is the occasion where I will cramp for hours on end. My stimulator can reach the motor control nerves if I turn the amplitude up really high, but I can only take that for a few minutes and it doesn't stop the cramps anyway. I just ride them out, really don't have a choice.

    You sound jaded in your opinion of a stimulator. Is it possible that your doctor and the medtronic reps were maybe a little to eager to try and provide you with a solution. That's why we do a trial so we can determine if the therapy can help. You've made several posts in a couple topic areas but provide very few details that outline what your problem is besides having muscle spasms. Take a moment to introduce yourself so others can jump in and see if they can truly relate to you.

  • A 6 day trial is not a short trial. As Dave pointed out Spinal Cord Stimulation is not for muscle spasm pain, as a matter of fact an improperly programmed SCS can cause a person problems with muscle spasms and is something the doc and rep watch out for. Now there are Deep Brain Stimulators that are used for fighting severe issues with muscle spasticity, typically severe cases of cervical dystonia. I don't know of anyone here who has had a DBS implanted.

    It's too bad that you feel you were railroaded into getting your stimulator(s). Can you elaborate a bit as to what led up to you going for a trial in the first place, how you felt during and after your trial and what led to your decision to go ahead and have the permanent implant done.

    Where are your stimulator(s) implanted? What type and number of leads do you have? How long have you had the permanent implant(s) and how many times have you had any reprogramming done?

    Was your trial back in February when you signed up on Spine Health.

    We'd really like to try and help you figure things out, but without some solid information, it's like flying blind.

  • Yes, it is a very emotional time when being faced with such intense decisions as to whether or not to get the SCS, dealing with the original pain condition, being 'new' to the arena of this new techno 'bionic butt', it all ends up into one big ball of madness.

    Sue, thank you for replying. I've since titrated sucessfully off the Fentanyl. I think the med you are thinking of is called "Naltrexone" or something like that to help with withdrawal and I believe it takes a specially licensed Dr to prescribe this if I'm thinking of the right one. In all honesty tho, it never ended up being that dramatic AS LONG as I have (Lortab) on hand for breakthru pain.
    But titrating off the patches wasn't as bad as I thought. I was basing my 'assumptions' by trying to take off a 100mcg patch and YES withdrawal will set in quickly! But I went on a monthly basis down to the 75's, 50's, 25's, 12's....done.

    Paul, thank you also for jumpin on this thread.
    Listen to these guys. They 'know' what they are talking about and they truly have your best interest at heart.
    I've been 'advocating' SCS support where I live because people simply have NOwhere to turn and YES you are right....these units are being pushed like never B4! I understand what you are saying about feeling 'railroaded'.....I hear this alot.

    Nutshell update on my unit: I'm getting 75% relief from the constant burning pain. Unit working great.
    'C' gave me some excellent pointers on getting more familiar with how the programs work (thank you C) :)

    I was gonna start a new thread regarding a couple of concerns that don't really pertain to my 'rant' thread here, so until then, thank you so very much everybody who helped me thru such an intense time.

    Dave, sorry your spasms are a constant issue. I pray something will give and you get relief from this nitemare.
    God Bless
  • No need to be sorry. It is what it is. There is little they can do for the problem. Most of the time its just a minor nuisance. I do have my bad days, but they are usually spread apart so I can recover.

    I'm glad to see you're progressing nicely now.

  • Gentleman,
    Es tut mir leid (I'm sorry) about jumping on this bandwagon without really introducing myself. I'm Paul (Hi everybody). I, like Dave's legs, have muscle spasms and have had them for 12 years or so. I have to lay over the back of a chair on an hourly basis to "message" them out and then have to put ice on my back to get them to contract. If I don't this then I won't be able to sleep at all. Most nights I don't sleep more than 5 or so hours anyway because the muscle spasms come back while in bed. I have tried enough pain pills too but get too habituated on taking them so only go back and beg the doc when I'm keeled over with pain.
    My Questions to all you guys (and anyone else who would like to jump in are this;

    Dave; You mentioned that the motor neurons are on the anterior part of the spinal column and that you can crank up the voltage high enough to help that. Can you tell me about what that voltage is? I've noticed that if I go up to about 3.0 V it does help a little but causes me to buckle over. (are you a doctor? you have a very segacious insight - either that or you have had so much pain that you really researched it to the point of a medical school student). As for your leg I can only suggest ice (bet you haven't heard that before-just joking) and maybe gentle stretching.

    "C"- Yes the trial was in Feb (Valentine's weekend), I have 2 leads -one for the subcutaneous muscles that cramp and one for the spine itself. I went to the trial in the first place because I have taken muscle relaxers, PT, Facet injections, Nerve blocks, trigger point injections, Botox injections in the muscles, 3 different epidurals and 2 discograms. The permanent ones were put in on March 12 and I'm finding it very intersting that my doc's office hasn't even called me back for the follow up appointment from my leaving them a message a week ago. What

    RRae, I am glad you are getting about 75% relief. What kind of voltage are you jacking it up to and where are your leads? I could hear your pain coming out of the scrren of my computer. You actually had yours done about 5 weeks before I had mine done.

    Also- everyone I went back to my mom's farm in TN 2 weeks ago so that I could get a better perspective from the doctors at Vanderbilt University Hospital and the doc there says he sees my problem in my lower back (He is very confident too-BTW), even though every doc in NY hasn't seen a damn thing (in my loweer back) in the one discogram and three MRIs that Iv'e had done here. The one doc here (in NY) said I had a disc crushed in my Thoracic region which is where the pain is. What should I believe? Thank you all.-Paul
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