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12 weeks post-SCS implant update

AnonymousUserAAnonymousUser Posts: 49,622
edited 06/11/2012 - 7:28 AM in Pain Management
Well, it's been just shy of 12 weeks since my SCS implant surgery, on December 3, 2008. I was really hoping that I'd have stellar results like so many people have reported, but that's not happening. I'm disappointed and trying very hard not to get discouraged. Here's my "War and Peace"-length update...

General whining: The post-op pain from the surgery itself was really harsh, much worse than I expected. The worst pain was from where the wires tunneled, second-worst was the "pocket" for the implant. One of my doc's nurses had told me I didn't need to bother with my employer's Short-Term Disability paperwork, as I'd "be fine in a couple of days" - I'm glad I ignored her (and the crack pipe she was obviously smoking). I was in enough discomfort even at 2 weeks post-surgery that I found it impossible to drive, even though they told me I could. I spent almost 3 weeks lying on my right side or standing. So not amused. (end General Whining Session)

I've had 4 programming sessions so far, all in the first 6 weeks post-implant. (I had a LOT of inflammation that took a while to calm down - they had a great deal of trouble placing one of the wires - so the doc says that it's not out of the question to have had radical changes in stim coverage/perception and need to re-program that many times.) Last programming session was Feb. 14th. I decided at that point to just try to work with the programs they'd given me, and let myself finish healing.

So now it's almost 12 weeks post-implant. I'm pretty much healed, except for some incision itching (still! lol) and soreness around the "pocket" when I have to lean back in a chair. The implant didn't seat evenly, one corner is closer to the skin than the other 3, and it gets very tender very fast with any pressure on it. That, I can live with. But the biggest thing that's going on is that the stim doesn't seem to be working for me. Yep, I'm still in pain. Fabulous!

I have a call in to my rep, to go in and talk to him & my doc again, try reprogramming again, and discuss next steps. Because it doesn't make sense. The trial was great, I got major pain relief. With the perm implant, some of the programs are at least in the right place - I can feel the buzzing is covering the areas where the pain is - but I'm just feeling the buzzing on top of the pain. Some of the other programs are now hitting me in the torso, and they are actively uncomfortable, so obviously those aren't the right programs. And all of the programs give me *awful* muscle cramps, for HOURS after the unit is turned off. *sigh*

The doc had talked about possibly needing to replace 1 of the wires, but I am strongly against doing this - I don't want to have to go through the surgery again, or the nightmare that was the insurance approval process. I'm also worried about losing my job if I take more time off. And still there's no guarantee that replacing the wire will make this thing work the way the trial did.

I'm really hoping it's just a case of needing to monkey with the programming some more. But I'm not feeling confident about the possibility of success. I still hurt, I'm still taking just as many pain meds as I was before the surgery, I'm still not sleeping more than an hour or 2 at a time, and now the bills are starting to roll in.

Speaking of the bills: St. Jude Medical - formerly ANS - is charging $44,800 for the whole setup of implant, wires, charger, etc. FORTY-FOUR THOUSAND, EIGHT HUNDRED DOLLARS. WTF?!?!? Total medical bills so far, between the trial and the perm implant surgery, are already at $150K, and I still don't know how much of it my insurance will actually cover. I'm so stressed.

If I had to do it over again, I don't know what I'd do. And I don't know what I'm *going* to do if this doesn't wind up working for me. I'm hanging on by my fingernails as far as being able to keep getting up & going to work every day. And yeah, I'm depressed, too. No wonder.

So to make a long story short: So far, it's not working for me. I still have some hope it will, but less every day. I'd love to be able to post much better news than this in another month. Think good thoughts my way, hmmm?
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Comments

  • I'm very sorry that you have not had an easy time of it and that the SCS hasn't been as successful as the trial. I hope the rep is able to find a way to program it for you that provides some relief.

    Best wishes,

    "C"
  • Sounds like you've been through it. When you mention muscle cramps - is that why the doc wants to move one of the leads? During my trial I had 2 leads, but one kept going "in the ditch" (what I heard them say over and over). When that lead was turned on, I had horrid muscle cramping and they said it was because that lead was directly on top of the nerve root, something you don't want.

    They ended up just turning that lead off and we only used the other one. Then, during my permanent implant, they had the same trouble with the leads tracking and wanting to veer off and not stay in the center of where they wanted them.

    I would imagine that if one of your leads is in really the wrong place, that would terribly painful.

    I hope you guys can find something that works. If your lead is "in the ditch", I would definitely consider letting them reposition it.

    Good luck with what you decide. I hope you find some relief.

    Take care,

    Cheri

  • I so wish you were doing better, and perhaps that I had not read this :SS It's ok though I want to be fully informed! I have read so many things that lead my to believe the trials are very hit and miss. They rule out condidates that it does not work for, but they don't do much for cases like yours where things just don't go as planned :?? I so hope they find that last ditch piece of programming or fix that helps you out. I question what I will do if I end up in your place. For me I am stubborn and I expect I would allow them to place the lead they want to and see what happens. Any port in a storm and I so desperatly would like to not spend the next 30 years or so on pain meds. That's just me though and I certainly have not gone through what you are going through! I also will not be placing my livelyhood on the line as we can survive on my wifes salary if needed.
    Again, I am so sorry this has been so miserable for you!
    I came here after you had your surgery in the hopes of going into my trial fully informed. I am learning more than perhaps I want to know. But, at least I will not be surprised in the end, I hope.
    Please know you will be in my thoughts and prayers.
  • sorry for your pain.thats why i;ll never get a scs just to unreliable for me.
  • BotzBotz Central FloridaPosts: 223
    MsCatmattress, I'm sorry that you are still in pain. I'm new to this. I actually go for the initial meeting with the St. Jude rep today for training/psych eval. Now I don't know what to think. I had envisioned a good future for my situation with an SCS. I hope they can get yours under control. I guess I need to ask many questions today. Thanks for sharing your update.

    Art
  • Do not panic, I have gone through many of the same questioning emotions about it and my decision is to approach this with as much information as possible so that I do not "crash and burn" if it does fail. SCS works for many, many people. For myself I can not walk away without trying it!
    My hope is that it will work and I will be able to walk away from shots, pills and misery. I can't ignore that possibility.
  • Thanks, everyone, for your responses. It's nice to not feel alone in this... and it's so hard for people to understand when they're not going through it themselves.

    Cheri, you may just have given me a more complete explanation of the wire placement issue than my doc has! I'll ask him when I see him... because if it really is that simple a thing, just *repositioning* the lead, it would be worth it. He's been talking about *replacing* the lead, though, which would mean opening both incisions again, re-tunneling, re-connecting to the battery, etc. Further discussion w/the doc is in order. I've already had X-rays done to show positioning of the lead, and they said it's "acceptable but not optimal." Doc says "it SHOULD be working right" and can't figure out why it's not. I'm just concerned with letting them do a surgery when there's only a small chance it'll help the situation, y'know?

    Art and Botz, it's *definitely* worth taking the chance. Even now, I'm saying that. Everyone has a different set of circumstances; they say the trial is a good indicator of response to the perm implant, but there are no guarantees. My doc says the trial leads went in like a dream, and during the trial I got immediate and marked pain relief. It was like a miracle, seriously. Unfortunately, during the perm implant surgery, the first lead went in fine, but they had SO much difficulty placing the 2nd lead (>30 min.!) that they had to take it out and start over with a fresh lead, and still had difficulty placing that one. Complications can happen. I knew that going in. They can't predict this kind of thing.

    I'm discouraged but am not giving up on the SCS yet. I'm stubborn too! :) I'd love to get off all the meds, and have my life back; I'm just worried that pursuing this further will just be more frustration and cost and pain without any benefit. And I'm equally worried that I don't have anyone else to support me if I can't work anymore. So whether it's SCS, or meds, or some other combination of therapies, I've got to find a way to live with the pain, managing it, instead of living in the tiny spaces around the edges of it. I'm only 42... not ready to give up yet!

    Will let y'all know what transpires when I speak to my doc and the St. Jude rep...
  • BotzBotz Central FloridaPosts: 223
    So I just got home from my meeting my St. Jude rep for training. The rep says that I'm a perfect candidate for
    the SCS. I have high hopes that the trial will indeed relieve my constant pain. I'm very willing to take chances. This pain has plagued me for the last two + years. Enough already! I have a date for the trial! Yipee! March 20th
    I cant wait. That is if I pass the psych evaluation.

    My Dr said last week they set up the meeting with the rep and the Psych evaluation at the same time. What a joke. I now have to contact insurance and set up the Psych evaluation my self.Now I have to wait another week for that to happen. AAARRRGGGHHH!

    MsCatmattress don't give up hope. "It's nice to not feel alone in this... and it's so hard for people to understand when they're not going through it themselves." I agree!
    Wife and son are over me and my issues.

    I know all about frustration. My fusion was supposed to be the fix all.
    Every step I take is like running into a wall.
    I can just see it now. My insurance will deny my SCS for some reason or another. I just changed insurance in January.
    My guess is they will demand more injections, PT or God knows what else.

    Wrambler, I'm with you 100%

    Art

  • is worth at least a trial for sure as you have nothing to lose. When you don't feel that seering nerve pain you won't believe it!

    MsCat sorry to hear about your woes. Sounds like you really want to keep it so let us know how it goes w/the doc and programmer :)

    take care
  • I'm not sure if you have had a chance to follow my posts, but for me, they also had a very difficult time during the permanent placement (and the trial, too.) Those leads were just not cooperating.

    I refused to let them close me up until I felt buzzing in the right place. The doc ended up lowering the leads further than he wanted. Lower than he has ever done. But that is where I felt the best. Why get an SCS if you don't buzz in the pain area, right? So, he was surprised and said that I'm just not personally wired "normal". lol Well, that's true - no one has ever accused me of being normal. lol

    So now, my leads are really low, but it feels really good. From my understanding, if your lead(s) can be moved back down and be in good position, they can do that easily. But if the lead must go back up to a better position, the will most likely start over.

    Have they given you a program (s) that doesn't use that wayward lead?? During the trial, that's what they did. They just unplugged/turned off the wacky lead and we only used one of them. Even with the one lead, I got both legs coverage, which surprised me.

    Hope they can figure something out. Like you, I'd hate to operated on again. But I'd really hate to have a lead in there laying on a nerve root and scar in place in that position. Does that sound fun long term? Ack - no way.

    Definitely get your doc to talk to you more, explain more, have him get that xray out and point and show you what he wants to do. Only go back in with a peace about it. I hate doctors who are so clinical they don't explain hardly anything. Ugh.

    Good luck!

    Cheri
  • BotzBotz Central FloridaPosts: 223
    MsCatmattress,
    Has your pain control improved? Just wondering how you are doing? I'm one step closer to the trial. I passed the psych evaluation yesterday!

    I hope you are having better success with your SCS.

    Art
  • Glad to here you are getting closer to your trial!
    let us know how it goes!

    Did you get the 3 hr written test or the generic "is this person sane" test? Just curious...
  • BotzBotz Central FloridaPosts: 223
    I was there all of 20 min for a two hr test. Don't mean to come off smug. But what a joke my evaluation was.
  • That's what we've been seeing. Either a quick evaluation like yours and mine. Mine was a standard "is this guy nuts" test. Took about 45 minutes. The second option seems to be a more elaborate test put together by the SCS unit makers or a determined effort to be VERY thorough.

    The second test that is very intensive can also be matched up with a rule that your discontinue narcotics before doing the trial! We have had a problem with figuring that one out.
    If you are truly in pain, stopping the meds is cruel. Then unless you have an immediate move to the permanent unit you have to either suffer till you get it or restart and stop the meds again! With withdrawal for most of us that places the people put under these restrictions in a predicament!

    The place that I went for my second opinion that started me towards the SCS trial required me to stop all Narcotics before the trial. Originally I was sad I had to come ot my local clinic and not there for the trial. In retrospect I am glad it is being done here. I do not think I could stop the meds and continue working. Since I am already breaking company rules for people working under restrictions I do not want Human Resources to remember I am still here and working!
  • BotzBotz Central FloridaPosts: 223
    and that I do not have to stop my meds. I had a change to one 3 weeks ago. I'm finally getting some management to my pain. I actually have been able to do a little around here. Sure beats laying around for days on end.

    My test was ordered by my pain mainagement office. I wonder if they have different psych evaluation codes based on your attitude in there office.

    The Dr. shifted gears several times. I guess he wanted to see how I handled myself.

    Hope you have a somewhat painfree day!
    Art
  • I have 4 more days to get thru. I hope it works for me and I don't have any issues. Days like today make me glad I have a possible treatment on the horizon. I truthfully do not know how much more my job will put up with! If I don't give them a cohesive answer as to what my abilities are going to be soon I may be on the unemployed lines...

    I hate to say it, but I honestly have so many items undone here at home I would welcom the at home time! I can do most anything, if I am very, very careful and enlist my sons help! My oldest is 18 and has just now come into his own. He is actually working his first paying job TODAY! he holds Scholarships at college and we want him to concentrate on his schoolwork, but he needs some idea on what working is. I found him some gigs as a stagehand overhire and it is very well paying and only one or two days every few weeks.

    Ah, I lost my train of thought. I'll stop now! I have a thread down in depression on my incoherrent ramblings if you want to read what a nutcase I can be!
  • BotzBotz Central FloridaPosts: 223
    I had no choice but to stop working. My days are 9 hr shifts at a cad station + 1 hr drive time. After about two hrs @ work I was looking for the meds.

    I should count my blessings that I have a 22 year old son/student that helps around the house. Likewise with the scholarships and school being the priority. He stopped working after his AA. School required so much of his time he had to stop working.
  • Everyone,

    I have to start off with this. I have worked as an insurance company sales rep for 15 years, although I just lost my job because of my thoracic herniations (the pain is just to much to work with). If you are having a problem or just need help CALL YOUR COMPANY'S BROKER. The broker will work with your insurance company rep to solve your problem. That is part of his or her job. The broker and the company rep will work together for you. They may not always be able to get the answer that you want, but you will have a much greater chance of success then if you just call customer service yourself. As a sales rep half of my day was spent on selling and half on service. The broker will work hard to help, and if he doesn't then your company should find a new broker. As a consumer I know how frustrating it can be working with insurance companies, but as an insurance employee I know how hard I worked to help solve people's problems. I also know that if it was left up to the customer service reps then the issue would not get resolved. The problem with customer service reps is that it is a boring job with a lot of stress so there is a lot of turnover. Many of the reps either don't care or don't have the experience to know what to do. That is why you have to get your broker and company rep involved. They will be more experienced and have more incentive ($$) to help. The bottom line for the broker is that he wants to keep your company happy so he can keep them as a client and make money. MAKE HIM EARN IT OR FIND A BROKER THAT WILL WORK FOR YOU. LIKE WITH ANYTHING ELSE SOME BROKERS ARE GOOD AND SOME ARE NOT. AS FOR YOU, THE SQUEAKY WHEEL REALLY DOES GET THE GREASE!!! BUT BE NICE. THE INSURANCE REPS REALLY ARE PEOPLE (BELIEVE IT OR NOT) AND THEY WILL ALWAYS WORK HARDER FOR THE PEOPLE THAT ARE NICE TO THEM.

    I am passionate about this because I really hate to see anybody suffer (including myself) because of beaurocratic bs from an insurance company. If you push hard enough you can usually find a person who will make a decision based on compassion and rational thought rather then just the out of the box company rules. I hope this helps.

    I am considering trying a neurostimulator. Obviously some people have better experiences then others so I don't know if it will help me or not. If it does help my concern is what kind of restrictions will I have to live with? I am 40 with 2 kids, ages 5 & 2, so I want to get better so I can have an active life with them. If the ns helps but then I can't do anything with them it won't be worth it.

    Ken
  • Hi everyone! I am new to spinehealth. I just had the boston scientific spinal cord stimulator implant on March 4 and went for my 4 week post op visit yesterday. on my 2 week post op visit the stimulation had moved into my left ribcage so they turned the left lead off. Today the doctor told me that they would have to go back in to do a revision. I left the doctors office in tears because it has been an awful painful recovery for me. I just can't imagine going through this whole thing again. He mentioned that they may move the generator as well. I don't know why that would have to be done..has anyone had this done? was the second time as painful of a recovery as the first? I have one 7 inch incision for the whole surgery. He also mentioned using paddle leads this second time. I have had 3 back surgeries not counting this implant and he said it wouldn't be as bad as any of them. I am just worried b/c the generator pain is so great..any advice or answers would be appreciated. Thanks in advance.
  • You may want to open a new thread in the Spinal Cord Stimulation Forum. Where was the IPG implanted if they used the same incision as the lead placement?

    Dave
  • Dave, Thanks I will post something there. The battery/IPG is in my mid back right side.They just pushed it over to the right from the incision.
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