Spinal Cord Stimulator Problems

Protege by St Jude

I'm a electrician, programmer, instrumentation troubleshooting. First they told me very little about it. It's like pulling teeth to get info. The dvd, manual doesn't match your programming unit. If I'm to make a educated quest it's the programming unit. If you notice the programmers don't use them. They are all the time switching things out! The programming units  are not consistent of what the buttons do. Twice after shutting down the simulator kept shutting down, As for the so call fracture leads, surges, no coverage. All three add up to bad programmer. You ever notice they use their phones or pad's to download the info to your simulator. 

Protege by St Jude

I apologize that I am just now seeing your reply. My new pain Dr wants me to do the trial for the St Jude with Burst, is that the same one you have? How are you doing?

Hi.  My stim is out and on the 17th of. Feb.  I have my first surgical consult.  I can't wait.  Oh the pain is back tenfold.  While I had the stim in it was working.  So my advice is go for it.  You have nothing to lose,

Dee

 

I am so sorry that your pain is back "tenfold", did they say why your pain is worse after having the stimulator out? Is the St Jude Protegie the same one that they are calling the St Jude with Burst? I am not a candidate for more surgeries so my choices are stay on strong meds or get a pain stimulator.

I wish you well on your surgery.

Hi the pain is worse as once they take it out cause there is no stimulation to control the pain.  Once I have the surgery, I hope for positive results.  I shall keep you posted.

Dee

Hi there.  Hope you are doing and feeling better.  On good note I am scheduled for implanttion of the BURST stimulator on 3/2 pending a cardio skip as he is out of town until 3/15.  Saw the surgeon who will do the implant on Friday.  Answered all my questions and then explained the whole procedure.  I almost fainted when they showed me the side and number of poins on the electrodes that will be implanted in the thoracic region, hence the CT scan to make sure there were no problems.  Yeah for me clear and open area for them to work.

The trial for the stim only had two leads that went up on the side of the spinal cord the permanant one, and the only way to describe it is, it looks like a paddle.  Google it.  They said there would be pain after surgery and it is an overnight stay.  Up the next morning and let the programming begin.  They said with the surgery, it can take up to 3 mos. for everything to be settled as far as the stim goes.  If not comfortable after that feel free to call the reps to come ad check it out.  I haved met the reps and they are awesome.  So comfortable with that aspect.  ow for 4-6 weeks from a surgical standpoint there will be discomfort in the bra area.  So I ordered two camisoles with a bra built in or will go braless at home.  No bending, twisting, heavy lifting stretching etc. for a while.  Small walks as they don't want you to become a couch potato.  Talked to the nurse for the surgeon and now will wait for pre-admission and anesthesia to call then I assume I am a go. I wil keep you in the loop as to my progress.  But after 3 surgeries, I know what to expect in the area of pain.  Keep me posted on what and where you are in your journey.

Dee..

Thank you for the update. I met with the Pain Dr yesterday and we are only waiting for the approval from the insurance. It was submittled a little over a month ago, I am getting concerned that it is taking so long. We can't do anything until they say that I am turned down. If I am then we will send them a nicely documented letter saying why I should be approved.

I have also had 3 back surgeries like you have, actually I have had 8 surgeries in the past 6 years, 2 were from breast cancer last year. So you can understand why I am getting rather inpatient. I am ready to move on with this pain stuff.

Keep me informed and hoping for healthy days for both of us ahead.

I originally had the Protege St Jude stimulator put in with only tonic stimulation. The Dr had the rep download the program onto my stimulator for the Burst program. The difference is the tonic stimulation you feel, and the Burst Stimulation you don't feel. With the Burst you get more diversion of the pain impulses which keeps the pain impulses from reaching your brain to tell you there is pain. With the tonic stimulation there is less coverage of the pain impulses so you have to keep increasing your manual settings. I have the advantage of using either. Adjustments are necessary regardless of which one you use. After surgeries there is tissue swelling that can interfere with feeling the results of your settings. Once tissue swelling goes away, you need readjustment to get maximum benefit. Reps do play you down when you tell them what you are experiencing. The companies that sell these stimulators should make it a law that the reps need to respond to the patients without bias and make every attempt to get the settings right. I have had a rep that watches the clock and leaves even if she is not done adjusting the settings, which is very careless. For your own benefit of education on these stimulators, you can find downloads online of how they work and setting info. I printed them out and studied how the settings should be. My rep did not even know how to give me proper settings. She told me I could not go past the number 10 on my settings, but the literature said 40-60 is the best range. Whether the doctor decides to keep a stimulator in is based on your pain relief, so the reps should make every effort to listen to the patient and take whatever time is necessary to get the settings right. Not every patient is the same. You can ask your rep what additional educational conferences about your type stimulator they have attended since they were hired to do the job. If they say none, get a new rep. This is a device in your body that is designed to line up with your brain wave pain patterns and should not be handled by someone who is not serious about doing the job precisely. I adjust my numbers according to how I am feeling, and I can tell you it is not the same everyday.

As time passed the pain was not being controlled even with the stimulator, so they did another CT Myelogram and found out that all this time my spinal cord and nerves were compressed for seven years since the accident and none of the doctors who were working with me acknowledged that this was the problem. My pain management doctor referred me to a new surgeon and he decompressed the nerve. What a difference!

Hi been reading all your posts, how I missed this one is amazing.  You said you found on line how to program the stimulator yourself.  Do you remember Where that is?  If you do that would be awesome as my rep seems to always be in a rush to re program me. So he ups the tonic until I cringe in pain, backs it down and puts it in BURST mode.  Then the pulse goes up to where my legs buckle.  Then that goes to BURST.  But once it's set it doesn't even touch the pain.  So if you could remember maybe I can get my own results,

Thanks Dee.

Someone showed me how to reprogram it.

Very easy  I'm sure you might find it on you tube

but ask they rep they could walk you thru it on

the phone

Thanks.  Will do.

I am having the same problem with the settings.  I know this was a while ago, but it is still going on with St. Jude.  I can not even get my rep to call me back.  I am having stimulations in my side and back.  Even though this stimulator is doing some wonderful things, it is giving problems also.  And I can find no information on how to reprogram this thing, just to turn it on and off and upping or lowering the settings. 

I would love to know how you are doing after your implantation of the Burst stimulator as our daughter is going to have that one implanted soon.  Thank you for any feedback and information!

I have just gotten a new rep to program the stim.  Let me ask you......1) Is this the trial?  If she completed the trial was it with the leads?  2). If this is the surgical procedure for implanting the paddle.

My complaint from the beginning was and not explained fully that the trial was using the leads and then they implant the paddle.  For me I had success in the trial but not after the surgical implant.  I was so angry with everyone that my last ultimatum was you either fix this damn thing or you get it out of me.  Since 3/2 it has been non stop pain.

The surgeons office found me a new rep.  I met with him 2 weeks ago at the surgeon's office.  He spent over an hour and a half working on various combinations in the tonic mode (the feeling of electricity or tingling constantly until we got as close to my main pain in the right butt).  Then he used the pulse mode till we found the same spot.  Then he put it in the Burst mode which is the silent mode.  We extended the on cycle.  I am now for the first time since March I am getting some relief.  Not as much as I want, but definitely on the right track.  I am upping the intensity on my own.

I believe and still hope that I will achieve better improvement by tweaking it periodically.  You just have to ask them will I achieve the same results after the implant of the paddle, which Was not used in the trial.  That is a big problem.  Because you cannot import the success in numbers from one to the other.

This is why when you read on here all the problems we have.  I am walking better although with some pain.  It should get better in time.  I wish your daughter the best of everything.  Just ask lots of questions.  Write them down.  Good luck and keep me posted.  If you want anymore info, feel free to contact any one.

Dee 

I am discouraged with it. Doctors don't know about these scs devices. Make sure to take notes and ask questions Best of luck to you Guys!

TreasureNurse, could you message me and tell me where you are located?

Dee,

You are so nice to have responded to me!  Our daughter is 32 years old and has been a continual 8 or 9 on the pain scale until receiving her trial SCS stimulator (St. Jude "Burst" where she experienced a drop to a 3 or 4 on the scale!    She received such relief from pain and her sciatica went away during the trial. The apparatus has been removed now and we are so excited for her to receive her SCS surgery potentially next month for the real thing.  

Question:  Do they normally implant the "paddle"?  If not, when do they implant that one?  Her pain management Dr. (excellent Dr. and our daughter is so grateful for her surgical skills) does not communicate at all with her regarding what to expect.  

I am hoping you are feeling better today and am so glad you are finally getting some relief!  Hopefully, your new rep is attentive to your needs. Our daughter experienced the same as you (during her trial)... basically being ignored by the rep. After his initial phone call, he never called back. Fortunately, she had an outstanding result so didn't require his feedback but it amazes me how they distance themselves from their patients as evidenced in a lot of the comments on this site.  

Thank you, Dee!  I am sending good "vibrations" your way and hope they help 😊 . 

Vada

Bonnie,

Could you share any tips with our daughter?  I am assuming you had the Burst which is the one our daughter will have put in as it is the one she had for her trial.  Thank you for any advice...

Vada

Hi Vada! What I discovered after getting the St Jude implant was that the Boston Scientific scs was the more advanced. Heart pacemaker technology (St Jude) vs Cochlear ear technology (BS). Regardless which one you choose

It really is important that you apply ice afterwards every 20 minutes and make sure you have both phone numbers and emails and a plan so that you can be in touch with both the doctor/PA and the tech.

I discovered a new device that looks promising as well. I don't remember the name but it is on Medscape. Don't mean to complicate things in any way but you want to explore all options beforehand.

Regardless, having a good tech will make recovery and followup care so much easier.

And remember to Ice, Ice,Ice!

Best of luck and keep us posted!

Bonnie

Thank you so much, Bonnie!  Will pass along the info to her...

Vada