Neurostimulator implant

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poohbear13
New Member


Date Joined Dec 2011
Total Posts : 4
   Posted 12/29/2011 1:12 PM (GMT -6)   
Hello,
         I am new to this site, after years of pain injections, procedures and two surgeries that still left me in pain I did the trial for the Stimulator. I have severe chronic lower back pain which keeps me from many things but the worst is that I am unable to sit for more that 10-15 minutes without pain level increasing. I also have leg pain, when I did the Trial it helped leg pain about 30-40 percent. They could never get it to work on my back but told me the permanent implant would reach the lower back. My surgery was 11/9/11 I can only feel the stimulation in my legs and still nothing in my back. At my last appointment two weeks ago I was told it could take up to 20 weeks to feel anything in my back due to all the swelling. I was not mentally prepared for the pain level of recovery I had to stay over night and kept on a morphine pump along with pain meds.  Home recovery was horrible with pain, I know everyone is different and the doctor said I had a great deal of scar tissue get through due to all the other procedures     
         Has anyone who has had the implant had it only work half way, I feel like I am at the end of my rope. I am in more pain now than before the surgery due to constant back and leg spasams that I am having now. My Neurosurgeon says it's normal, I know I must be patient its just so difficult. I'm praying I didn't make a mistake by having this done. Would love some feed back!! Thanks!

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 12/29/2011 4:15 PM (GMT -6)   
Oh our Poohbear

I am so sorry that you are having such a rough time in recovery. I never had that procedure done to me but what you are experiencing is correct. I have read other posts about that topic and other members had issues with their implant and it took some time to feel the full affects.

Hopefully other members will read your topic and respond. I do hope that your recovery gets to be smooth sailing for you and the swelling diminshes. I will put you on our prayer list and the whole congegation will pray for you. We do care and you will be in our thoughts and prayers.

Take Care

Betsey
crushed lower knee and vertical fx of tibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected leg continously without improving/allergic to metal in left leg/leg isnt straight/ metal removed in July//then total knee replacement/straighten out leg/more phsyxical therapy/take oxycontin,flexeril,cymbalta,vicadin for BT

kpainc
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/29/2011 5:13 PM (GMT -6)   
I have had the stimulator put in last nov and your story is almost exactly like mine. However, I went back after it all settled in and they reset that stimulator or had it adjusted and they reset it to cover my back which did help cover that area. I do however do not use it as often as I should because It is very irritating. I loved the trial and thought I was cured for life, but the real one is a different deal. I do not want to be a killjoy but I do not love the stimulator and if I had to do it all over again I would not have wasted my time or money or the pain in recovery. I would recommend being patient and seeing how you feel in a while and just pretend it is not there. Just take the meds and in a couple of months have it reset and see if it works then. I am now on a butrans patch 10mcg and subtrex for breakthrough pain, cymbalta 60mg (down from 90) and neurotin. I probably would be on this without the stimulator though so i do not see the benefits. I was sold that I would off all the meds and life a natural type life... not!!!!

Sorry to disappoint but it is the truth and I wish someone had told me the truth before as I am sure you do too... this again is just my experience some good some bad... give it time and get it adjusted and see how it goes from there...

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 12/29/2011 8:50 PM (GMT -6)   
Hi Poohbear and kpainc - welcome both of you.

I'm sorry that neither of you have had success with the SCS. Reading both your stories makes me quite angry - the SCS isn't an option for everyone, and I may be wrong but it sounds as though neither of you was really given a good understanding of what you were doing before you went ahead.

Poohbear - I'm sorry that you're experiencing pain like this. I'm in much the same situation - my primary problem is a disease called CRPS, but I have numerous compression fractures and some disc bulges that cause intense pain when you sit.

As far as your Stimulator goes, it does take a little time to get the full effect but I'm not sure why they would have told you that the permanent implant would work on your lower back if they couldn't get any stimulation there with the trial leads. I'm also wondering why your doctor even allowed it to go ahead with you only having 30-40% relief - the usual guideline is a minimum of 50% and ideally 60-70% relief from a trial if a person is to be considered a good candidate for the permanent implant.The reason for the trial is to ensure that they can get coverage in the required areas and that the stimulation is acceptable - sometimes it can be unpleasant, or even downright painful. The extra scar tissue does make for more painful surgery, and I'm sorry that yours was so bad. I've had my stim for 5 1/2 years now and including the trial had five surgeries for it, plus one to put in an intrathecal pump. Most of mine have been fine - my trial and first permanent implant were only mildly painful, barely bothered me at all - I took a couple of paracetamol the second day I think, and then I was fine. My last one was bad - a lot of torn scar tissue and bruised nerve roots.

Are the back and leg spasms something that have started since the SCS was implanted, or are they related to your existing problems? If they're new, they could be related to the electrical activity - i.e., inappropriate stimulation of nerve or muscle, causing misfiring, causing the muscles to spasm - or it could be that the lead has moved and is actually compressing something. Either way you need to talk to your doctor or you tech (the person who is doing your programming) about it because it is NOT normal mad You may need an x-ray to check that the leads are still in the same position, that nothing is loose - and you probably need your tech to do a diagnostic on it to make sure that there's no current leakage anywhere in the system as this can also cause pain and stimulate things it shouldn't.

I have my fingers crossed that it will come good as things settle down after your surgery. Back and nerve pain are horrid things to deal with and I hope you can get it under control.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16409
   Posted 12/29/2011 11:22 PM (GMT -6)   
Hi Poohbear and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but happy that you have found this forum. It helps to find a place to go where other people understand your language and know what its like to with such challenges.

Something I don't understand is why your trial was considered a success with the numbers only being 30 to 40 percent reduction in pain in your legs and no help at all with your back pain. From what I have read and from what others that have done the SCS trial, that would not be considered a successful trial. They say there should be at least a 50% reduction in a persons pain and anything less is not considered a successful trial.

I can see why you are having such a rough recovery considering the scar tissue issues from your previous surgeries. With you being almost 2 months post op I would hope that you start feeling better from a surgical standpoint here pretty soon. I am sure that this has worn you down and you are just sick of the whole mess and rightfully so. I don't know, I have some mixed reservations on the implant doing anything for your back pain since it did nothing during the trial. The relief from the leg pain is it enough in your opinion to have gone thru with the surgery or are you feeling like it was all a wash?

Something I would like to point out to you is we have a search feature here at the forum that is located at the top right. If you will go there and type in SCS units, you can pull up a bunch of information about the units from previous posts about this. There is a lot of valuable information in those posts and there may be something there to help you out.

I do hope that you will keep us posted on how you are coming along. Take care.
Moderator Chronic Pain Forum

poohbear13
New Member


Date Joined Dec 2011
Total Posts : 4
   Posted 1/1/2012 4:00 PM (GMT -6)   
Hello,
       Thank you for the feed back on my Stimulator Implant. I so regret my decision, I just hope time will help. I am sorry that others also are in so much pain. My next apt is Jan. 13th and I will ask about an exray to see if any of my leads have moved, so thank you for the advice. I pray for the New Year that we all will find pain relief :-) .
Poohbear

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 1/4/2012 1:14 PM (GMT -6)   
Hi PoohBear... I'm in the same boat. 
 
I had my stimulator implanted back in May, and had it turned on a few weeks later. Since then it's gone down hill. Alot of what i have to say will be reposted in a post by me to explain my absence, so forgive me for repeating myself.
 
Probably alot of what you've already been told is the same as I'll say. Give it time to heal; you had major surgery, and there's alot of trauma to your body. It does take time. Also you can have up to a dozen adjustmens by your rep before you'll start to fine tune it in on the coverage you need. Don't feel like you're harassing your rep; they're there for you. At night if it's to uncomfortable turn it off for sleeping, or down real low. What sort of leads did they use? I had the paddle leads used, which is most of my problem. See my trail in Feb last year was with the normal leads, and everything was pretty great. Now my leads cause almost as many issues as they help, and I've had one then more person ask me if I regret my choice. I do. I had so many hopes pinned on this surgery restoring a good chunk of my life back to me that I lost to my pain. Instead it robbed me of more of it.
 
The big question you have to ask yourself is is it helping at all? Even a little reliefe can be worth it. That's the only reason I haven't yelled for someone to yank this thing out. Just don't give up on it yet, and keep getting ajustments done till you get the best coverage possible. If you're rep can't help you request a tech from the company. I had one come out and spend over an hour trying to get my programming right. Unfortunately they couldn't, but that's my issue.
 
I'm sorry you feel this way, that it hasn't helped. So many of us have hoped for improvement, and instead have ended up with heartbreak.
 
--Kristi
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone, Celexa and Zaniflex.
February 2011 successful SCSU trial
May 2011 SCSU implanted

poohbear13
New Member


Date Joined Dec 2011
Total Posts : 4
   Posted 1/4/2012 6:23 PM (GMT -6)   
Hi Kristi & Straydog
First of all I am sorry you are in the same boat! You have said word for word what the doctor and Medtronic techs have said. I have the paddle leads in as well and for my trial they used the normal leads. My Trial helped the sciatic nerve pain in my left leg, as strange as it sounds when I lay on my right side thats when the left leg pain is at its worse. I am now waking with sciatic pain even with the unit on. I have also turned the unit off during the night when it seems like its causing more leg pain.
I was told by the doctor that did my trial that even though it did not work in my back at all in the trial, that odds were very, very, good that the permanent implant would target not just the legs it would have a great deal more leads targeting the lower back area. He drew me a complete diagram showing me how the Neurosurgeon would do the implant. I was told that even if it was only 30-40% the permanent one should get it a great deal higher. BUT......I had to say 50% coverage for insurance to cover.So after everything I've tried since 9/08 I went for it. Feel like a SUCKER!!
My Neursurgeon told me the only two things left for me to try was the stimulator implant or a Morphine pump. After having everything test, procedure, PT, Chiropractic, acupuncture and several surgeries. I guess I just wanted to believe yet one more person that said "Yes, this will help you get your life back!" If I only had a dollar for everytime I heard that statement. For now I will just try to focus on the hope that when my body heals I will get some relief. And No I would not tell anyone to have this done. I will look for the other posts on the SCS Units . Thank you once again for your imput.
Diane (Poohbear)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16409
   Posted 1/5/2012 1:02 PM (GMT -6)   
Diane, my heart goes out to you over this whole situation. I truly hope that in time you do get the relief you are seeking. I am truly floored that your dr actually had you lie about the amount of coverage in order to get the insurance company to pay for the implant, thats just criminal. It makes you wonder how many other people he has conned and suckered into this same scenario. I understand what you are saying though about how we just want something to work and help, please don't beat yourself up for having the implant. The problem is a dishonest dr its nothing you did. I don't know what your relationship is like with this dr but I would have a very hard time believing anything that comes out of his mouth after this situation. The guy should be reported.

If you ever get to the point of entertaining the thought of a pain pump please feel free to contact me via email. My email is listed here at the forum. I hope that you will hang out with us here at the forum, we all learn so much from each other. Take care.
Moderator Chronic Pain Forum

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 1/6/2012 3:24 PM (GMT -6)   
Diane, I'm not surprised your doc had you lie. I'd like to think he was thinking of the fact that some help is better then no help, and insurance companies will not authorize/pay for a SCSU unless there is a 50% improvement. Also I heard the same thing; that hopefully with the better leads my coverage would be better, ergo my reliefe would be better. I remember having to go through all that nonsence for it as well. For me the big issue was that I had a very successful trial, but then they couldn't find a surgeon to do mine given it meant tampering around in the cervical space. Before that though my pain doctor wouldn't even do my trial unit till I had secondary insurance. Guess it was more important for him to get paid as much as possible and not the little ammount that Medicare was going to cover. Unfortunately I can't get secondary insurance due to the fact that in my state you have to bee something like 55 - 60 to qualify for secondary; I don't fall into that catagory, so Medicare was all I had.
 
I'll keep you in my prayers hoping that as you continue to heal your pain will decrease; it hasn't been that long since your surgery. Keep "harassing" your tech/rep too, to continue to try and adjust your unit to get the best coverage you can. Pace yourself, it might help. Also not sure what other meds they've got you on, but I know I've got a muscle relaxant as well as my pain meds. Keep advocating for the best treatment for yourself, don't let it rest, but you know all this. Have they talked nerve blocks, or even tried them? I know a friend of mine who has major back issues even with her stimulator. She's on Oxycodone, and Oxycontin. She's in the process of trying to get the nerve blocks done again, might be something similar might work for you too; your issues sound so similar to her's.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone, Celexa and Zaniflex.
February 2011 successful SCSU trial
May 2011 SCSU implanted
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