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Perm SCS

CandyJCCandyJ Posts: 105
edited 06/11/2012 - 9:02 AM in Spinal Cord Stimulation
Well for those that know me you know it has been a long long road for me. For those that don't well here is a short version. I was in a car accident 03/08, I thought I was fine until like 2 weeks later when pain was so bad it brought me to my knees. Went to doctors and after many test ended up having a ACDF c5c6c7 on 01/09. Now after all this time I have done all the injections, taken all the pills, had all the physical therapies. I am now having a SCS put in on May the 8th signed all my paperwork on wednesday. The only thing that worries my DH and myself is I have a higher chance of paralysis than normal ppl. I have severe spinal compression which means I can not have the normal paddles they use for a perm SCS I have to have the same leads that they use on the temp. When I had the temp I had like 70-80% less pain so it is a chance we are willing to take. I have done my homework on everything and now I am just waiting, it is a countdown now as of today I have 19 more days to go. If anyone new reading this want to chat or buddy me and pm me that is fine I am always open to talkin. Love all my spiney family. Gentle hugs to all


  • Good Luck. I am waiting for insurance approval for the trial.

  • 12 more days starting to get a lil nervous.
  • Dont get all freaked out over the implant, I had mine put in march of this year,

    The procedure is not such a big deal compared to any open back surgery in my opinion,
    After i survived adr surgery and then fusion surgery then hardware removal,
    Scs implant is a walk in the park,

    Well 1 st week of implant my ass did hurt like crazy where scs unit is cant say it did not,
    Once that heals up its not so bad,

    Now i just have to charge me up like the energizer bunny , I keep my scs prety low to where i barely feel it after i realised trying to blast the pain makes it worse and is not the way to do it as i 1 st thought,

    I find it to help more just keeping it bellow the pain level to bring the nerve pain down to meet the stimulation, Going above the pain level just simply increased my nerve pain so in my situation this is how i been using it,

    Best of luck and hope it helps you out in the end,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Candy,

    Congrats on getting the SCS, hopefully this will resolve some pain issues for you and you will get some functioning back. Just don't over do it while you get used to the SCS. Be sure if you have any issues with it to work closely with your rep, in getting the program just right for you. Good luck.
  • almost 10 more days.
  • 9 days and counting, at least i am into the single digits now, lol
  • sorry haven't kept up on countdown have had alot to do to get ready. I am down to FOUR DAYS (4)

  • Well now it is really official got my reminder call this morning. Found out that I will b in the surgery center for a minimum of 3 - 3 1/2 hours. I am into the hours countdown not so I will say 72+ hours to go. Had a really rough night so I am really looking forward to Tuesday.
  • Well bad news got a call this morning that there is a shortage of generators for the SCS. So now I have to wait what I have bn told will b 2 weeks to a month at most. Lets just say my eyes are red and I have done alot of crying and questioning. I will discontinue the countdown till I know something more thanks for all the support.
  • >:D< oh noooo candy I am sooo very very sorry
    I was counting down with you. That is just the worst.
    Waiting and waiting now more waiting.

    Well we will save our dancing for 2wks from today ~X(
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • thank you Mary I am so hoping that it will only b 2 more weeks and not another 3 months. I am gauranteed no longer than a month. Talked to rep today and he said I am first on the list to get the small batch that is coming out. He also said to call him next week around the 15th to see if anything new has come up.
  • Sorry to hear that your surgery has been delayed. I just found out that my SCS has been approved for the permanent implant next week and was about to post to find out some info on this and read your post that your's has been delayed, so of course, now I'm worried that mine might be as well. If you don't mind, can you tell which brand you are having implanted? My permanent implant is a Boston-Scientific. I called my rep and am waiting to hear back.

    Again, so sorry. I can just imagine how you feel, to finally have relief from the pain so close to within your grasp, only to have it be postponed. I will be devastated as well is my gets delayed...
  • Like most people here I've been monitoring your countdown. You have to be so disappointed to have gotten all prepared despite your growing level of nervousness to have them pull this!

    I'm so very sorry because I understand that it's more than what I just said but also an extended time to be in pain. This is just awful!!

    Keep us updated. :)

    Wishing all a pain-free day!
  • I am so happy just got call getting my perm on May 29th. Still waiting on time call. But I am happy just to have the date. Thank you all for ur kind words and for keeping my spirits up. Rep sent me note telling me that we are 1st on list for one and that there will b no more postponements. HAPPPPPY HAPPPPPY HAAAPPPPPPPYYYY :D :) ;)
  • Very happy for you Candy. You may re-commence the countdown!! :D
  • nah don't think so this time this time I am just gonna let the day hopefully just fly by. Just the only thing I will re-commence is the organizing of my house for when all is said and done, lol. :)
  • I'm so happy for you! I also did the countdown, albeit in my head, okay on Facebook too because my friends and family were keeping track, but the only rescheduling that happened for me was they moved mine a week sooner. Totally made scheduling the hubby and kids a nightmare! Still, I'm happy I am done.

    Soon, you will be in the same boat as the rest of us...and I can't wait to hear your progress. Mostly, I can't wait to hear you say that you have your life back or some sentiment close to it. We're all crossing our fingers for you!!
  • Oh I had 70-80% pain relief with the trial so I am so looking forward to the perm. From reading all the horror stories thou I am just glad my nerve damage has left me numb mostly back there so that way I won't have to go thru that bad stuff. Thank you agian for all the well wishes. >:D<
  • Well it seems really official now. I got the time I am suppose to be at the outpatient surgery center, have to be there at 6:30am they do not want me to take my meds before I go up there so its gonna be a fun fun morning seeing how mornings lately are my absolute worst. Just figured I would share the info with all my spiney friends. >:D<
  • I was told to absolutely take my medication as usual. I'm glad I followed instructions too because while I was given a time of 0800 to be there, I wasn't finally rolled into the OR until 1130! I cannot even imagine the suffering I would have endured if I hadn't taken my medication. And because I'm the hardest 'stick' on the planet, it took them over 40 minutes to finally start my IV, and in fact, the reason it took so long to get into the OR was because they had to keep numbing me to dig for veins! (IV's are extremely painful for me but I wonder if that's another beautiful symptom of fibromyalgia???) They last a maximum of 4 hours because my veins are hyper sensitive, where they cannot even tolerate normal saline. My last CT scan with contrast had me screaming at the top of my lungs as it felt like they injected lava into my vein! Wow I went off on a crazy rant. I'm having a lot of pain where my wires are tunneled and I'm feeling like an emotional wreck. I'm so sorry for venting I'm just so tired of being trapped in this body, at 33 years old, when it started 12 years ago. I need a hug! :'(

    I'm very happy for you Candy. So anxious to hear how it's helping you. Take care.
  • So you are just supposed to endure pain up until they get an IV in you? Heck, that took 2+ hours after I showed up to get that in, and another hour + to get anything IN the IV.

    Anywho, glad things seem to be rolling along> very excited for you.

    And R_U, that's horrible that you have that much difficulty w/ IVs...I don't love'm but don't have nearly the issues you have. I had some this time, but I explained that in my "mini-blog" post. I've got a nice huge, deep painful bruise to boot thanks to being so dehydrated going into it.

    That would be one of my biggest pieces of advice going into this, is to drink water like it's going out of style the last three days before to ensure you are well hydrated. I think that may have contributed to my migraine, and sure as heck contribute to all my IV problems.
  • Unfortunately for me, none of the 'tried and true' methods of making IV insertion easier have ever worked on me. From hydration (how do you do that and abide by the nothing by mouth after midnight rule?), to using a heating pad to warm my veins up, all lead to agony and failure. I was told by an IV team supervisor that if I ever have to be admitted again for an overnight stay, that I need to get a PICC line right away.

    Yeah whatever, last time I had a three night stay the staff outright ignored me when I told them this. They said we'll have the best IV person do your IV and you'll be fine, just wait and see. Well, after 45 minutes and five sticks later the vein they finally got held the IV for four hours and had to be removed because I developed thrombophlebitis, which is always what happens. I had four IV's in that time and they all developed thrombophlebitis, which is quite painful. The last one was placed in my shoulder. I was so black and blue it looked like I had allowed an entire phlebotomy school practice on me! It's made worse by the fact that they come in every morning at 4:00 and try to take blood from another vein. I don't know about everybody here but quite frankly, I'm sick and freaking tired of medical personnel thinking they know my body better than me. After they see what happens they just keep doing more IV's because if they do the PICC like I originally said then its them admitting I was right and they were wrong. Can't let that happen right?! And I know it sounds crazy but when I found out they needed a blood test as part of the pre-op for my SCS, I told the PA that having to go through that was enough to make me back out. Because now when I have to get blood drawn or an IV, it sends me into the shakes, my blood pressure goes nuts, I feel like I'm going to pass out, and I start sweating like I ran a race.

    She couldn't believe my response, and went to talk to the doctor who said if they had to, they could get the blood from the IV before starting fluids. I find the IV the most traumatic part of any surgery and I don't know if it's the Fibro that makes blood draws and IV's god awful painful or not, and really the cause means little to me when I'm getting it done you know, but I will go into a panic attack when I have to get one.

    Oh my bruises from the multiple attempts at the IV for my SCS just faded, it's been four weeks! Sorry for the rant!!
  • Today I went and resigned my papers. Found out that I wiegh to much and need a diet but hopefully after the SCS I can start excercising more and get my old body back. All seems so real now. AGAIN!!!
  • and he is gonna turn it on same day no waiting doesn't want to see me in pain anymore that I have to b. Talked to him about the placement which will b right below my left shoulder blade he is gonna mark my bra strap so they get it to where it will b more comfortable. As far as bending I can not put my chin to chest or bend my head to far to the right or left. I have to take it easy he said about a week and I will b feeling like myself first week is the hardest. 4 days and counting.
  • Don't "wuss out" like I did and moan and whine like I have the last week and a half!!! You can absolutely run the stim and is very helpful, it just so happens it causes some discomfort to me in the incision area, and honestly, the recovery meds work on the original pain I have as well, so it's been kept at bay without the need to run the stim for very long. It's really not that terrible, I guess, but like I said, I'm one of them "wussy" men when they get sick, ill, or after surgery.

    I'm so excited for you, Candy, and if able, chronicle your experience for all of us...it may spark a point I forgot to mention in mine and will provide more insight for all those future SCSers out there! Plus, I believe your area of pain is a more "traditional" use for this device; moreso than my groin pain (which really did not enjoy the near 24 hours without percocet yesterday, oy!!, but the stim worked for a bit, so I at least now know for a fact that it covers the pain!!! Which is AWESOME!!!)
  • I'm excited for you! I'm also a bit concerned by your last post. Now it's entirely possible that I am reading it wrong, but it looks like they told you that you'd be back to yourself in a week. If I read it wrong, please let me know, and ignore the remainder of the post!

    They also told me I'd be back to work and feeling like a superstar the following Monday. I had my surgery on Friday. I got so excited, because I despise missing ANY work. I remember the first time I had to leave my current job early due to a killer migraine. I was so upset I had to leave I was crying like a giant baby. Today I am five weeks post perm implant, and attempting to go back to work next week. I realize I'm always an extreme case but one week was ambitious for anyone!

    If you're still reading, good luck with everything. Hope you do follow Nav's suggestion and keep us posted with all the fun and exciting details.
  • I think what my rep meant was the majority of the pain from the incision would b subsided and I would b feeling better. I do have a high threshold of pain so I have addapted to things. As far as full recovery he said 2-3 months to make sure leads and generator get attached good. Well now on 2 more days.
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