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Complications with the Drg stimulator implant-; weeks post op

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rachelle_09848
rachelle_09848

Hello, I’ve just got my scs from st Jude’s , it was proclaim device, which supposedly is the new device as of jan 2018.. I’m 4 weeks post op, I’m feeling a lot of pain, lots of pinching or stinging at the battery site, Lots of lightening bolts shots, warm around the battery. I can’t lay on my side cuz it just pinches so much and I can’t lay on my back because it feels so sensitive being on it... I feel like one of my leads moved because I can feel stomach in my knee and it’s suppose to be upper thigh. Last week I went in to get antibiotics for a slight incision infection, then today, a big area of leavage showed up after I got up from laying down. It’s leaking through a small hole that’s ftom the incision on the battery... I’m not sure what to .. I get relief for my right hip like I need, it’s just this battery placement... has anyone had these problems? Did anyone leak about 4 weeks post op?? I feel the battery isn’t as deep in my skin like the explained. It hits everything, from rolling over in bed, to trying to drive my car but I have to sit up to the wheel and lean the chair back do it doesn’t rub.. also haven’t worn regular pants, I’m scared they are going to rub and hurt the incision. Their plans is to have me back at work Tuesday when the st Jude website says 6-8 weeks and it’s only been 4.. I’m a nurse do I bend lift twist and do al kinds of stuff. I’m just stuck I don’t want it taken out... but I feel like the DRs f blowing me off like I’m makimg it up!! 

1 like, 15 replies

15 Replies

  • Disley66
    Disley66 rachelle_09848

    Posted

    Hello Rachelle

    I am sorry to hear you are having so many problems.  First of all, you MUST speak to your Surgeon as he/she is primarily responsible for the placement of your device.  It starts and ends with him/her.  As I have said before on this FORUM and you would know, this is a $40,000 operation, therefore if you have pain, infection etc etc your Surgeon is responsible for this. Please don’t be worried or nervous about contacting his office, this is your basic right. 

    There is no way you should be experiencing these problems.

    I returned to my Surgeon at the first sign of trouble.  

    As to the actual depth of the device Rachelle, it can only be put just under the skin because if it was deeper, and therefore under muscle, it won’t work. 

    I asked this same question. 

    Here is Australia it appears that most of the devices (I was fitted with the St.Jude one, 12 months ago) are inserted in the abdomen.  

    After 4 months of having mine, it had to be moved as it was really close to my waist and inhibited bending.  I am quite a small build so it was really uncomfortable.  

    It was really great for my pain but in the end, the device, or my “Alien” as I called it, was worse than the leg pain for which I had it in the first place.  

    It was really red on one corner where it jutted right out and got caught on my clothes.  I started getting pain in my right side all around my ribs and my lower back was a shocker. I couldn’t sit down properly. 

    2 weeks ago I had it removed and am now recovering.  

    It is unfortunate really but it was too much and I had 4 surgeries in 12 months.  The whole year has been completely taken up by the “Alien”......

    However, the leg pain has not returned and that can happen so fingers crossed. 

    Please, please go back to your Surgeon and do not take no for an answer. 

    Good luck 

    • rachelle_09848
      rachelle_09848 Disley66

      Posted

      Thank you for responding. I’ve put a email in, and am going to to go Mon at 2.. hopefully all is ok. I’m just worried about returning to work. They want me rushed back and I don’t want anything to mess up. I’m not allowed modified duty so it’s full work duty or off completely. I’m worried something will pull or twist wrong and he said just be careful. But it’s still early... I hate when DRs don’t care and think one standard is for all when everyone heals different . I hope your leg pain stays away and everything works out for you. Hugs and prayers from California 
    • rachelle_09848
      rachelle_09848 Disley66

      Posted

      Oh, your device was in your abdomen??? Mine is lower back, middle towards the spine right at waistline.. if I put regular pants on , this is gonna totally rub right on it. You’d think there would be a better spot to place it .... do you know of any other spots that have been attempted? 

      Thanks for all your help 

      Rachelle 

    • Disley66
      Disley66 rachelle_09848

      Posted

      Hi there Rachelle

      I really don’t know where else they can put the device to be honest.  My Specialist actually told me that a much smaller device (Alien) has been released but it is not ST. JUDE who I was with.   The way they implant them here is to obviously put the leads in place in the Epidural space of the spine then the leads go around to the right next to the ribs and join on to the device in the abdomen ..... so when I started having problems it effected me everywhere.   

      It’s odd isn’t it that they do the implants so differently here.  

      Gee your “Alien” is in a dodgy position as well isn’t it Rachelle?  How do you manage to lay on your back then?

      I cannot believe you are “leaking” oh my God.  Promise me you will insist on proper treatment and whatever you do don’t let the Specialist make you feel as if there is nothing wrong ok.   If you have real problems speak to SHINE LAWYERS ..... Obviously they are a US Company and I used them here after I first had my accident. They were absolutely brilliant. 

      As you do correctly say Rachelle, we are all different and feel pain on varying levels.   It’s like the drugs that work for some and not for others. 

      As for you returning to work, seriously, if I were you I definitely would not be returning to work until you have all this sorted out properly.  I was told I couldn’t stretch, bend or twist for at least 4 weeks, but even after that I was quite careful.    It isn’t worth your health. If you can afford to stay at home then do so. 

      Keep us updated with your Drs visit ok?

      Love from The Blue Mountains, in New South Wales, Australia 

  • DJ1976
    DJ1976 rachelle_09848

    Posted

    OMG Rachelle.  Have you contacted the surgeon who did the implant surgery.  If you are having leakage go to the ER.  There is definitely something wrong going on.  You might need an X-ray to make sure the leads have not moved.  I am more concerned with the leakage.  Call your rep as soon as you can and demand someone see you.  Depending on the answer you get, I would go to the ER.

    Good luck Rachelle and keep us informed.

    Dee

    • rachelle_09848
      rachelle_09848 DJ1976

      Posted

      I have a call in with my rep now.. I’m a tad scared.. thank you for responding 

      Rachelle 

  • DJ1976
    DJ1976 rachelle_09848

    Posted

    It may be absolutely nothing.  Better to be safe than sorry.  I too had the Proclaim stimulator.  The permanent implant never achieved the same level of relief as the trial. I had it removed after 7 mos.  I wish you much better results.

    Dee

  • faith48458
    faith48458 rachelle_09848

    Posted

    When I started leaking from my surgical site it was a staph infection and very serious!!!!  Sepsis!  Go to an emergency room if you can't be seen by your surgeon fast enough.....  I have been going thru a second operation to open up and clean out the surgical site then on picc line (Home IV line)  for 8 weeks(9 days left to go then multiple months on 2 other oral antibiotics.  Hope that that clears up the infection.  If not, the stim comes out and start all over with the picc line and multiple months of antibiotics.  Hope you have better luck than me!

  • allaroundanne
    allaroundanne rachelle_09848

    Posted

    OK Rachelle, I am a pain clinic doc, retired, who put in these things. I can tell you that you most certainly can NOT return to work as a nurse with a leaking wound.  You are at GREAT risk for picking up some resistant strain of bacteria in your work setting that would get in through your leaky site around your battery. All of your wounds need to be healed before you set foot again as a caregiver.  You really would be not only risking your device but your life.

    As for placement, my first battery was put in my buttocks, but a little too close to my spine and so it sat right over my sciatic nerve and I got horrible sciatica when I lost some weight and my fat pad shrunk.  I now have both my batteries placed far laterally in both butt cheeks and I like that placement.  I have no problem sitting, laying down, sleeping, wearing normal pants, etc. It is just perfect, but as I said, it took one go to find perfect LOL....

    • Disley66
      Disley66 allaroundanne

      Posted

      Hiya

      Brilliant advice, brilliant .......

      It’s great to hear a “mostly” successful story from you.   I am really pleased that your device is working successfully.  

      I still find it “funny” that here in Australia the device is placed in the abdomen yet in the US they are in the back or buttocks! 

      Anyway, bit of a moot point now because 

      I had to have mine removed almost 3 weeks ago.  It’s a shame because it did work on my leg pain but unfortunately my body was seriously unhappy and in the end the cure was worse than the cause. 

      Once everything is settled I am going to look at scrambler therapy. 

      Continued good health to you ....

    • allaroundanne
      allaroundanne Disley66

      Posted

      OK I give up, what is scrambler therapy?  Is that some Aussie thing like vegamite?? LOL.....
    • Disley66
      Disley66 allaroundanne

      Posted

      Hahahaha 

      Actually it’s used widely in the US Military apparently.

      It’s a non invasive treatment where leads are placed on various parts of your body like an ECG.  I don’t know the exact ins and outs but you have several sessions each lasting an hour and it’s supposed to literally confuse your brain in to thinking there is no pain.  

      It is nowhere near the prohibitive cost of the implant but as it’s really new to Australia you have to get special permission if it’s to be done on an insurance claim like mine.  

    • allaroundanne
      allaroundanne Disley66

      Posted

      Ah, I found it, we have it too at a few big medical centers.  They say it is only for neuropathic pain and is only about 70% effective.  I am going to ask about it at my next appt as everyone seems to have forgotten about my neuropathic arm pain but me!  Thanks for bringing this to my attention!
    • Disley66
      Disley66 allaroundanne

      Posted

      Hiya Anne 

      Yes sorry I should have said it was for Neuropathic pain.  That’s what I’ve got. Six operations on my leg (after a fractured tib/fib went horribly wrong) left me with constant pain but my Orthopod basically threw up his hands in frustration and said there was nothing more he could do.  Seriously? 

      Cut a very long story short (which I am sure you have noticed I am not very good at hahaha - see? Can’t help myself )

      Aaaaaanyway, 6 years in OxyContin etc (20mg per day) and oxynorm for break through pain. Bla bla bla.  Then woke up one day about 18 months ago and thought “ENOUGH”.....Went to my wonderful partners’ Dr (also an Orthopod who had done his hip surgery) “Sherif Rizkallah” and what an eye opener ! He looked at my truck load of scans and notes and said “There is no way you are having more surgery and in my opinion you should not have had ANY, I do not believe the fracture caused all your pain, I believe the accident set up a reaction whereby your brain believed you had had a major trauma (it was a stupid fall) and what you are feeling is in reality, nerve pain which can in fact feel very sharp.  I would like to send you to a Pain Clinic” 

      Well, as you can imagine Anne, I didn’t know whether to kiss him or cry !! All those operations, Compartment syndrome (nearly lost leg) ......it was horrible.  My initial Ortho asked me to go before a panel of some of Sydney’s top Orthopaedic Specialists to get their opinion before the first surgery and they were unanimous in their opinion that bone had grown from fracture site (can’t remember medical term- something -osis haha ) and needed to be removed. Won’t say any more about it right now. .....skip forward to Professor Sundaraj (all these great names) who heads up Nepean Pain Clinic (Western Sydney) ......he reiterated Dr Rizkallahs views and started me on LYRICA which worked but did not agree with me. Soooooo, he discussed the Neurostimulator.  

      I jumped at it of course.  Basically it was a real success for me pain wise but as I said, my body just didn’t like it. Ho hum. 

      ........there you go.    Short and sweet... NOT

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