Spinal Cord Stimulator

Doug,

I had a back fusion in 1999, and went through so many procedures and nothing work, had the nervo put in Sept 2015 and was in bed for 3 months with more and more pain every time the would adjust it, so finally it shut down, well went to Drs who I actually haven't seen him since the surgery, so I have sclerosis in my fusion, might have to have a another surgery in there, but they are moving my battery which is pushing out of my back, n now it's gonna go into my stomach, not happy, and he's keeping it in til I get a new one which I will have to travel out of state, my thing is the fusion having sclerosis in that region, I don't want to have anyone go back in there, and now more shots in my neck forarm numbness, thanks for listening, just so much pain in the fusion area there are days I can hardly function.

Take care @some pain free days ahead

Cynthia ( Cindy)

Hi Kathy

​The Nevro is the kind that Cynthia had that put her in so much hell.  It has been available in the US only a few months.  It was in the UK way before us.  The doctors want me to get it now, but I have had 2 Medtronic SCS's already.  And the 1s5 one created so much scar tissue that the second surgeon decided to put my new one in a completely different spot - so guess what? It doesn't work!!! So my new neurosurgeon's answer is - let's try for a 3rd one!  Before you get the Nevro, make sure you check out what Cynthia has been through with it.  She has written quite a few "blogs that are well worth reading.  Good luck to you!  You have been through so much already, I would hate to see you suffer any more.  Love, Linda

Linda,

Get this the dr was like well I knew the nervo wasn't for you but we figured we try it, and with the battery that's just trial and error we are so new at putting this in so we made a mistake by putting it so close to your skin, didn't think this was gonna push out like it did, we will just go back in there and put it in the front, even though it's not gonna be on we just want it in there for a new system we think is best for you. I was in awe when he said all this crap, like I'm a person with feelings not a lab rat for you to do trial and error on, unbelievable. I can't wait to see my grand babies that will make my pain go away for a bit, just seeing them running around and smiling melts my heart.

Take care and talk soon

Oh p.s. the ins company denied my back brace dr said I can't believe that, you are a person who needs a brace because of all your problems, no worries we will get you that brace, I'll have the girls appeal it.

Plus insurance company because I can't just stay on Medicare I have to be put on a HMO

And that's the problem Medicare would do it in a second but being in an HMO they get to make their own rules on braces meds surgeries etc. So nice....I just shake my head at what we have to go thru to get the right things, equipment, meds and unfortunately surgeries.

Cynthia (cindy,)

Hi Cindy. You said it perfectly. We're being treated like lab rats. The dr's don't look at each person's situation to see if implanting this thing will just further complicate things for a person who's already been through hell because they took their dr's advice, and now have incurable pain every day as a result. I'm meeting with my pain Dr on Tuesday to discuss this, so that he can see that I've become informed about it. The office only wanted to give me the reps number at first so that he could answer my questions. It almost makes me wonder if the dr's are getting a kickback from these companies for installing their devices. I'm on Medicare disability. If I did decide to try it, will there be any out of pocket costs? I've read that some people on this site have spent thousands of dollars on it only to have it turned off and removed! My girlfriend goes to the same dr's group, and she seems to be going for this thing because her Dr recommended it for her without doing any research. The office won't let me speak with anyone that's gotten it.

Hi Linda. A third! That's insanity! Scar tissue is what cases us all so much more complications and pain. When the neurosurgeon did my fusion they couldn't find a place to get into my L4/5 area because of all the scar tissue. He just kept shaking his head at my post op visit saying he'd never seen evidence of a dr going into the same area so many times when the laser surgery obviously wasn't working, or saw evidence of the bone splint he supposedly put in to keep the bones from collapsing since the disc was now gone. I'm meeting with him on Tuesday, want to see this thing and am preparing a list of questions. It seems to me that it's possible they have no patients that have gotten the permanent implant yet since they've only been using it the past couple months. Cindy's battery issues are at the top of my list. And Mel just said it's square and can cut through the skin! Good Lord!

Sorry, my use of pronouns is confusing. I'm meeting with my pain Dr on Tuesday to discuss the Nevro. They're pushing it so much I feel I need him to help see that this won't work for me so he continues giving me my percocet. I had a pain Dr in the past refuse to continue unless I tried out one of these. I also want my pain Dr to get to "know me". It seems that they treat us like someone at the deli counter, and they're just cutting us what we want. Please feel free to suggest anything I should ask him.

Kathy,

​Here's what I would do.  Google the name of your pain doctor that wants to put in the nevro.  Google "Dr. So and So reviews"  See what his patients say about him.  How many Nevro's has he implanted? Also, does he just do the trial? Because he probably just does the trial and a surgeon will do the final implant.  In my case, the pain doctor knew what he was doing, but the surgeon didn't.  So find out the name of the surgeon who will actually do the permanent implant.  Google him as well.  Ask him "How many Nevro's have you implanted?" Have you had any that came back with any problems? Tell him you've heard about problems with the battery overheating. Tell him you've heard about problems with the battery being uncomfortable and painful when it's been implanted, and e

My posting got cutoff. Anyway, ask him if he has had anybody with problems with the Nevro?  Communication is very important.  The Nevro has done wonders for lots of people.  And so has the Medtronic and the Boston Scientific.  But there are some people with complicati and you hear about us in these forums.  Also, very important, if you have a lot of scar tissue, how will he deal with that? Will he be able to place the Nevro leads or paddle or wh atever it is in the right place?  How confident is he t hat he can do that?  Now, how do you like him? Is he an arrogant ass or does he seem warm and concerned and genuine.  You have to decide what is the best for you. 

Thanks Linda! Those are wonderful suggestions. I'm going to write down my list of questions so I get everything in. My PT also texted him and said I had concerns, so hopefully they'll have a conversation between my visit on Tuesday. She really knows me and feels that much of my pain comes from soft tissue, which won't be helped with a nerve stimulator. I'm definitely going to Google them to see what I can discover online.

Hi Kathy, Mel was getting his information from me, but he stated it wrong.  It' rectangular and fairly large and can cut through your skin It cut through Cynthia's skin, and at least one other person on this forum. I have been trying to find the size of it again, but I think it's about 3 inches long by 1 1/1 wide plus 1/2 thick.  Which is much larger than the Bostonian or the Medtronix uses.  My Medtronic doctor told me he knew someone who had 5 of these put in him.

Not at the same time of course!

 

Thanks Linda. I've had time to read more info on the study and think about everything. I seem to be different from most people. Both my physical therapist and chiropractors who have had years working with me and seeing my reactions, agree that I have myofascial dysfunction, and have reactions that others don't. For instance, when my PT fixes something with her dry needling and relaxes the spasms that are preventing my hip from seating properly, my body goes into war against it and reacts with mucle spasms all along different fascial highways throughout the muscle connections. When she does anything to release the spasms, scar tissue and adhesions in my lower back and hip, I get spasms throughout my abdomen and chest, especially the sternum, so I always have a stomach ache and difficulty swallowing if it gets bad enough.She actually worked at our last visit on the spasm under my arm that made it painful to raise my arm over my head because that fascil highway decided to get involved, connecting with the mastectomy scar tissue and my hip. Your hip is actually connected to your shoulder, uppr back and abomen My muscles all buckle down to protect me from injury, pulling the bones out of alignment and causing more pain from those spasms too. I have a cool chiropractor who understands this, and after he adjusts me they go away. So, now my fascial system has become abnormally reactive from the abdominal surgeries, and mastectomy, followed by all the back surgeries which threw my nervous system out of whack. And now we're fighting to get it back on track and functioning normally. I know it's going to go nuts if I have anything else implanted, so I think the reaction from this hopeful device, will make things much worse for me as my body begins war against it. Since the device doesn't control confusing these type of signals, but mainly radicular pain, I'll be left in worse shape. I also have hypersensitiviy that complicates things. My PT puts a laser pad over the area she's working on to help it calm down. It feels like a heating pad, and on reactive days I actually feel it's getting too hot and burning me, and if I don't take it off my skin gets a red burn in the area within the 15 minutes it's on. The pad really isn't hot enough to do that, but my nervous system reacts as if it is. For this reason, I can't imagine a battery that will get warm implanted within me that I can't get to if I'm having a hypersensitive day. I suspect that Cindy might have some of these issues as well, and that's why things are going so poorly for her. Thank you so much for your concern and help. Now I just need to get my pain Dr to understand all of the colors that make up my pain profile, instead of seeing only black and white like most dr's do.

Oh my goodness Kathy, I can see why you would not want to have a neurostimula.tor or any other kind of implant put in your body! Is there anything you haven't had surgery on? Did you forget about your appendix? Wow! You have been through it.  My muscles tend to stay tightened up to, and some doctors wonder why you can't relax. I'm figuring out that my current pain management doctor is a one trick pony - the Radio Frequency Ablation which  has helped my foot somewhat, but now he wants to do that to my femoral nerve on the inside of my leg, and I am not so sure.  It scares me, and I have read of many other alternatives and he didn't seem to know about any of them, so it scares me.  So I guess he only understands one color of pain management.  And I'm not sure what to do next since I'm on state aid and I don't have a choice about my doctor. So I'm just sort of frozen where I am for now. They want me to get this neurostimulator, but I already have scars from 2 previous ones, they weren't able to get the 2nd one in the right place, so why wo uld they be able to get the 3rd one right? My typing is jumping around on me. We are moving to Idaho in 5 months and I am afraid to do something that will make me too sore because I have to get ready for the move. And I'm scared of it, because Idaho will be cold compared to where I live now in Arizona. Anyway, what helps you? Warm baths? I bet that's probably what helps you the most. Someone has been talking a lot to me about the healing properties of wool.  I had no idea.  It's actually very very interesting.  You should look it up.  I'm going to invest in some wool socks for my feet.  Take care, and I will talk to you later. Linda

 

Geez! I've never heard of that. It sounds horrible! I'm so sorry you can't have access to a descent Dr. This guy sounds like a real putz! As far as alternatives, I have a lot of difficulty climbing I and out of a bathtub and can't sit comfortably without a lot of support because of all my metal and bolts. Unfortunately, I'm allergic to wool, but can use Alpaca, but it's expensive so I've just got a nice, warm hat. The dry needling from my PT and adjustments from my chiropractor really help, and they both take Medicare. The cold or rainy weather here in NJ does affect the way I feel in a negative way. We just moved into a new house in December. The kids did most of the packing, and I'm unpacking very slowly. Still haven't found the other half of my dishes. I have my husband lift boxes and put them on the table to limit my bending. It also hurts to lift more than 10 pounds, so I try not to. I try to be conscious of what causes more pain, and try my best to avoid it. Take your time packing and get someone else to lift the boxes for you. ~kathy