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Why all the restrictions on scs permant vs trial

ellineellin Posts: 188
edited 06/11/2012 - 8:29 AM in Pain Management
Just reading posts on scs and it seems that you can resume your life like you did after a trial is placed. But, when you have the perm. one it's like hell at first. Off work for 8-12 weeks no arm lifting on the stories go. Can you tell me how this is??? Tell me also how you did both at trial and after the perm. one was placed. You can also pm me. Thanks my first appt. is the 17th of April and the more I look into this It seems like I find out more.


  • The difference is that there's no worrying about the temp leads scaring into place. It is a given they will move as they are only tacked to the skin with a few stitches and are only in for a few days.

    Once the permanent one is placed, you want the leads to scar in, and if you move around too much you will keep that from happening or you will cause the leads to move and scar into the wrong place. So if you want the proper coverage, you obey the "rules".

    There's no reason you can't go back to work a few days later, unless you have a job that requires you to lift, bend or do much twisting.

  • As "C" says, no real worry at all about the trial as that lead only needs to stay put for a few days. You don't want to lose placement on the perm one. That would take another surgery to reposition or replace it.

    I to dread the 6-8 weeks of not doing anything, but I want the best coverage I can get so I am going to do it.
    In fact I plan to ask my PM to put down 8 weeks in writing for my work place if I can get him to do it. Medtronic recomends 8 weeks to be sure. I really want to be sure. I spent 15 weeks in a minerva brace sternum to chin.
    If I can make it through that what's another 8 weeks? Piece of cake :D (Ok, I'm not really looking forward to it at all) I'm not sure at all if my work will let me be there under the 5lb and no BLT restrictions. It will be whatever it needs to be at this point.
  • Ok I am a nursing aide. CNA I work for hospice and do home visits which includes bending and sometimes lifting. I do bath visits 5-6 pt's a day. At this point I do only pt's that walk or I do a bed bath which is even worse on my back with the constant bending. Please tell me also why is the pain not much on the trial and lots of pain for the perm. This is what I have read. I just got home from my PM Dr. who I like but is a total as-!! He is done with me he is limited so, he knows about me going to mayo on the 17th of april. I just got taken for fifty bucks my copay. He MA told me he was going to redo the RF which was not the case. Well, I am pretty pissed but, need to let it go. I know now that this is it. Dr. told me about that test to check where the pain is coming from I know that test hurts really bad he told me that the scs is good but, he talks a good talk but when asked questions he is like gotta go.
  • For the trial, the leads go through 2 tiny holes in your skin, which are made using an epidural needle.

    For the permanent with percutaneous leads, they have to:

    1) make an incision to lead insertion site so that they can anchor the wires to muscle tissue and reduce the movement. That can be anywhere from 2-6 inches long, depending on the amount of fat tissue in the area.

    2) make a second 2-3 inches incision at the pocket site, remove some tissue, and irrigate it vigourously with antibiotic solution, to prepare for the battery pack

    3) shove a long metal tool to under your skin to make tunnel from the lead incision site on your spinal column to the pocket site so they can run the lead wire from point A to point B. The tunnel my leads went through is about 26 inches long.

    For the permanent with paddle leads, step 1 is modified to include a laminectomy, so they cut through muscle tissue at the lead insertion site and open you up wide enough to cut off a piece of bone to make room for the lead to slide in.
  • BotzBotz Central FloridaPosts: 223
    I didn't know that the permanent surgery would be that intense. Hopefully they can go with the percutaneous leads for me as I really do not want another laminectomy. For the relief I have with my trial it will be worth anything. I have been thru enough surgeries over my years. Oh well it is what it is.

    I did understand the 2-3 inch incision for the battery pack and tunneling under the skin for the lead wires.

    Is your battery pack in the front? 26" is very long. That would be from my neck to the bottom of my butt! I was guessing maybe 8" if put in my hip.
  • My extension wires run from my neck to my butt. I have a very long torso and like BionicWoman it required LOTS of tunneling. The swelling went down after a week or two and it was no big deal.

  • BotzBotz Central FloridaPosts: 223
    Doc says the he will use percutaneous leads with a small incision. Then tunnel the leads down about 8" to where they will place my battery pack. I will have the the ANS Eon Mini™ model.

    I miss the trial unit and asked if I could keep it until the permenant is in.
  • Botz, I'm glad to hear you are getting a permanent version and the trial went well! I expect you may be done before I am...
  • BotzBotz Central FloridaPosts: 223
    That it worked so well for me. And the fact that the permenant implant will be fairly soon. With all the hurdles we have to go thru I can't believe that I managed to get on the schedule so quickly. I hate sitting around waiting for all the steps to happen. Just get on with it already!

    I had to go back on my breakthru meds. Last night was one of the beast nights for me! Up from about 12:30am. Pain finally settled down early this morning.

    Have a pain free day!
  • I have found the week after my trial to be BRUTAL :''(

    It is like someone handed you big ole bottle of pain relief, the "as near to perfect" med as you will ever find! :X

    Then, they got mad at you X( for no reason :O

    So, They take it away and leave you hurting with no medicine!


    I hurt so bad yesterday that even though Dr. Shrink had given me a script for Ambien I went straight home to my Norco.
    I did not even get the script filled. I have to do that today.
    I have not slept well in a long time now, still yesterday the pain won.

    I thought "the rain is made of razorblades"...

    Today is not quite so bad, I am ever so slightly in less pain. <:P

    Next Wednesday, I'm going to Disney! :H (I hope I can handle it! OK)
  • BotzBotz Central FloridaPosts: 223
    The beast is winning image:)" alt=">:)" height="20" /> I'm having a devil of a time getting it under control. Where the hell did that bottle of tingling go?

    Are you headed to Disney World or Disneyland?
    Hoping that Tink can give you some fairy dust to help relieve your pain?
    I'm live about 20 min from Disney. Disney can be pretty busy for spring break. Long lines to stand around in. Good luck! I hope the park is fairly quiet.

    On top of my issues my son went and tore his ACL wakeskating and is having knee surgery today. So now my poor wife will have to deal with too of us in pain. He's pretty miserable knowing he is down for the summer.

    Have a pain free day!

  • Yeah, spring break <:P We would prefer to not fight the crowds, but we will see! Youngest son is on a high school trip and we have frequent flyer miles! Flight cost us $10 ea :) Niece works in hotel management, found us a suite for $109 a night :D No kids staying with us = Priceless :))(

    If it's too crowded we will veg out.

    Sorry to here about the ACL, my sons best friend had his done last summer, not too bad a time all things considered. They are young! He'll be out on a brace going strong in a few days!

    I was amazed at how bad the pain attacks after getting some relief, I went from 6 Norco daily to 4 while I had the SCS. When it was taken away, I struggled till Monday, then surrendered and went back to 6. All the pain after the trial has shown me that being in denial about my condition is not a good idea. Trying to pretend I don't have a problem does not heal me...I want me leetle friend!
  • BotzBotz Central FloridaPosts: 223
    We had annual passes and would drop in see a few attractions. If the parks were crowded we would split. Your going during the EPCOT flower festival. That is very relaxing. Enjoy a couple of the concerts.

    Sitting here in the hospital waiting has my back on fire. Time to go lay in the car and wait.
  • Sometimes we become unaware of how much pain we really are in, until someone takes it away for a short time. Then when it comes back, it is showered, changed and refreshed.

    Don't worry, after a few days it will get dirty and mundane and back to its normal self once again.

    Hang in there.

  • Showered and refreshed indeed. I think it is ever so slightly less today. I have talked to my PCP and expressed me fun week post trial. I wish we could fast track my SCS, but the trip to Florida has been in the cards for almost a year now, my son will only get to go with his high school once and we promised to be "in the state" while he is there!

    I am praying that once I wade through a few pressure changes on the planes the warmer weather and a few theme parks will do me good! I actually like the escapism available at these parks. It is easy to lose yourself in the moment. I just hope my shoulder/neck/back play nice!
    I got a fresh bottle of Norco to pick up on Tuesday before I go. My happy thought is a break from the monotony of work and when I get back my Perm SCS will be approved :SS

    So, :C: you never had told me what super powers we get once the SCS is in place? =)) :H
  • Wrambler said:

    So, :C: you never had told me what super powers we get once the SCS is in place? =)) :H
    Ah but I did! I just used some of them to make you "forget" once I told you.

  • "C" is really G girl from the movie My Super X girlfriend!

    Your not supposed to use your super powers to torture old guys!

    I actually tried to edit the Calling emoticon but since you replied that option is gone, so, Ooopsie! It's here to stay! I typed "C" but the calling guy showed up!

    We should stop now, we done murdered this thread, totally off-topic. Maybe you can use the super powers so no one notices =))
  • My pain Doctor has recomended that I try a SCS. I go the 13th. of April to let hem know what I have decided to do. I have been glued to this site reading everything i can about this implant.
    Some people say that having the permenant implant is very painful. Are you "out" during the implant? I do know they have to ask you if you feel tingling in the proper place.
    Just how painful is it?
    I live alone.....will I be able to return home and manage on my own or will i need help?
    I live about 50 miles from the hospital whare the operation will be....will i be able to stand the long car ride back?
    Do they give you pain meds to take care of the pain while you are wating for the permanant implant?
    Thanks to anyone who has some thoughts on my questions.
    Kinda nervous about this.

    Hugsssss to everyone. >:D<
    Patsy W.
  • hi Pat, welcome to the forum and good luck to you with your implant.As for your ?'s I can only tell you what happened with me.I went for the trial and was in heaven when I woke up from a twilight sleep!The trial helped me like 80% with my pain.I continued my meds until next p.m. appt and lower my main med (Kadian)morphine...Then I went for perm scs....You will need someone with you for at least 2 weeks..someone needs to change your bandage on your back where the incision is.My incision was about 5 to 6 " long.It was nice to have someone change the bandage on my hip area where battery was placed too.No turning around, you do not want to twist your torso just yet.You are "out" completely during implant..General anesthiesia:I am about 40 miles from hosp. so I made sure I had a pillow and a trash bag so I could slide into the car easier.You will not be able to drive.This is major surgery and takes about 2 to 4 hours.You will prolly sleep on the way home...I have never quit my pain meds completely and actually went back up on main one.I wish you well and check into home healthcare in your area.They came out and helped me.
  • The usual is that you are kept awake but numbed till they are sure they have the leads placed correctly. At that point they give you twilight sedatives to put you out and run the wiring and create the pocket for the unit.

    You should receive pain control for the surgical sites and how painful it is really depends on if you get paddle leads or not. Recovery is the pain from the surgery plus, no BLT, no lifting of over 5lbs, maybe a soft cervical collar for cervical patients, a support belt of some sort I have also heard mentioned but never seen one.

    You will need help to get home and I would suggest at the minimum 2-3 days till you're sure you can handle your routine. Maybe longer.

    I am on the same pain meds as I was before my trial. I have been told by my PM he wants me off them once the permanent is in. We will see if I can truly do that when that bridge needs crossed. I made no promises, I simply told him I understand his wishes. It is not the norm for PMs to expect the SCS to totally replace meds, Your doctor will tell you what he wishes to see and you should be throwing all these questions his way too!

  • Thanks guys for that info.
    Pain is very bad today, so bad I had a cold cornbread muffin for breakfast! :(
    I will let my pain Doc know i want to go ahead with the SCS trial and prey it works.Keep your fingers crossed.
    The pain Doc has let me know he will not write a script for the Oxycodone I am on now.Seesh...Dang, it is the only thing I can take!! I can't take Lyrica or anything like it. Very bad reaction.
    Thanks for the tip on "Home Health" care. I had not thought of that.
    I have low back pain that meds do not touch. It will be interesting to see if the SCS help it. :?
    Now i am heading to my compfey chair, prop my feet up and hope the day gets better.
    Best to all....
    Hugssssss >:D<
    Patsy W.
  • BotzBotz Central FloridaPosts: 223
    I had my permanent implant on 4/3. I love my SCS. My pain is very well controlled.
    Every thing has been going very well. Feeling better and trying to hold back has been hell. I can’t reach anything. Keeping from bending is difficult. Reaching is a normal reflex. Try normal things like taking off your shirt without lifting your arms above your head. My luck the one thing I can’t control got me.

    I seem to sleep very well so I can shut off the stimulator at night. Saturday night I turned it off and went to bed, everything was fine. Got up Sunday morning my leg pain started in so I turned on my SCS and bam! I had painful stimulation in my ribs. I ran thru all of the programs I have and nothing helped. I panicked all day Easter Sunday. First thing this morning I called my rep and met her an hour later at my Dr’s office. She successfully modified my programs. RELIEF again!
    Apparently one of my leads must have shifted during the night. Almost impossible but be very careful when you roll in bed.

    Diligence is definitely needed to comply with all the restrictions.
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