Spinal Cord Stimulator

Nk04743,

I'm trying to go to your page and do a private message as your info was to blocked if u go on my name you will see am envelope click it and write me on there would love to see what you suggested

Thank you Cynthia

Hi Cynthia, (cindy)! I joined patient to contact you as I've been scrolling the web looking for patients either on the Hf10 Nevro trial or permenant implant. For days now your posts are the only recent on the subject I hope you don't mind me directly contacting you. I'm on day 4 of the Nevro Trial and have some questions that I feel the rep is not answering for me. I woke up from the procedure in terrible pain and was in terrible pain since yesterday. At a 9-10 scale. Which is normal for my back but it was a 9-10 for all three...back, leg and incision pain. The rep got a little frustrated with me and said "you know Mikel-if your numbers don't match we can't proceed with the implant-we are looking for at least a 40% reduction." It kind of stumped me as I'm literally trying to distinguish and gauge accurately between all three pains. Is it my understanding that the rep is supposed to adjust the program higher if I'm not having the results they are looking for? Yet she has not changed my program! After much thought and racking my brain as to why they would not adjust during the trial..I am left with two conclusions... That I am I under some kind of blind placebo, where they aren't giving me any info on settings so that they can know where I am before I do. Guinea pig type testing where they have me at the lowest because they don't truly believe I'm at a 9-10 constantly. Or is it that program 1, 5 lights on the ladder (where I am at now & since discharge) is as best as it gets? I feel like someone should discuss all the programs and how they work:i.e. First program, 5 ladder lights is say, bottom part of right leg, but not higher up on the leg. Or second program is low back relief but not as much coverage on the affected leg. Does it not seem that if the patient knew which programs covered which areas 'we' would have better input for the reps to adjust??? i guess I'm a bit frustrated with lack of finagling the device at the reps hand and then having her scold me for not having enough pain relief. I'm in trial for 11 days due to my doctor being on Thanksgiving vacation. I'm just wondering will this rep even adjust my programs within the allotted time or just keep me on this program until I'm fed up with the lack of results that I just don't go through with it. She seems reluctant to move me through the programs for some reason. I am a 34 year old wife with two children. I've stayed at home not working since the birth of our son 7 years ago. My background is this is my 2nd failed multi level lumbar fusion with Infuse's bmp devices in addition to normal hardware with traditional fusion. The first fusion was July 08 & second was this past February 16. I have centralized chronic low back pain with pelvic pain. Persistent right buttock pain, back of the thigh, front of the knee burning (past numbness) and burning Achilles' tendon. Right leg reflexes absent since last surgery. Post op MRI revealed something again protruding at fusion level L4-5. L3-SI was fused. So with both surgeries failed doc pushed me through to the trial and it all came very fast. Any info will be GREATLY appreciated!

Hi Mike. How are you now after they have taken the leads out.It's been four months since l had the nevro trial.I now have massive pain in the thoracic region where the leads went up to.Neck pain and a headache constantly since the trial.Same thing.They did not believe me.The clinician feller that I had should of been a car salesman. All he was worried about was,if I was going to get the permanent one.All the best to you.

Steve19937

They just want to push u into the unit they don't care I had migraines before but now unbelievable and arm n neck pain are worse I have mine shut off because I was being electrocuted they told me no called Nevro myself still getting juice to battery n leads so don't let them push u into to something you will regret later, surgery on December 8th to get it finally after 2 years of pain and now it might be my fusion which I told them before all this aggravation,

Good luck I'll keep you updated on my condition

Cynthia ( Cindy,)

Best of luck and hopefully pain free days.ahead ( fingers crossed)

Hi Steve,

My trial was rather long at 11 days so they are still in but tomorrow morning I go to get them pulled. All things considering my trial was a success. We ended up changing my program to the second level and at 5 ladder lights. It seems to cover the most of my lumbar pain and right leg pain on this particular setting. I was at a 9/10 pre trial and I'm currently at a 2/3. Cut medicine by half and I can sit with almost no pain. It's been nearly 10 years so this relief is stunning! Q1:Did you have any relief at all during your trial? Q2: Was the trial for your cervical, thoracic or lumbar? Q3:Are you awaiting the permanent still at 4 months post or did you decide not to go through with it? Q4: Did you have migraines and that amount of neck pain pre trial? Q5: Have you ever had surgery on that area? I wanted to make sure I am understanding that you had increased pain during the trial and since. Hope you are as well as you can be today!

Hi Mike.l had a fusion of L4&L5.I can't walk without morphine. When I woke from theatre,my upper back,neck and head were killing me.l never had these pains before.4months later l have had no relief. Can't moove my head.l have been reading a bit about other people,what has gone wrong.One man ended up in a wheelchair.He couldn't control his bladder and his bowels. All the studies for these devices are paid for by the shareholders.I told the pain specialist he has to tell people this can happen to them.He told me I was making it up.How many people has things gone wrong and they hide it.lf I can change one persons mind from going through what I am now I will feel a bit better. I know when you are in pain you will give anything a go.I wish I could go back to how I was before the trial.It did help with my pain levels.But when l turned off the unit it felt like all my nerve pains were highlighted worse then ever.Good luck to you.l hope if you get it it goes well.

Wow Steve, I also had L4-5 as my first surgery and this past February had L3-5 fused. It didn't go very well which led me to the Nevro trial. I got the leads taken out about 9 hours ago and all of my previous pain has returned. Even my leg feels heavy just as it did pre trial. I have a month to think about it but I already want it back in my body for relief. Doctors in the states are becoming more and more unwilling to write prescriptions for narcotics. Which ironically is causing a major influx of herion addicts in the middle and upper classes in record numbers! They're lack of properly handing out strong MEDS to people with strong pain is upsetting the whole system making normal, intelligent, upright citizens run to the streets for pain relief. I've only ever been on 7.5 Vicodin 2x daily. I have never asked for refills early, "lost" pills, or asked to be tritated up in dosage yet they still treat people like me as drug addicts. Which I don't understand because every EMG, xray and MRI shows I have severe spinal and nerve damage. I don't know what pain management specialists want from us....not to be in pain??? Sorry that's redundant. I'm literally sick of begging doctors for pain relief and can not stand to think that's how I'll spend every doctors visit for the rest of my life. So at this point I'm willing to take my risks with the implant than jeopardize my sanity for the next 30 years. I'm very positive you suffered a dural tear or dural puncture during your trial. Which led to the migraines. But it also sounds as though you may also have a spinal infection. It Could explain your recent flare up and symptoms in areas that have never hurt before. If your doctor is willing to order another MRI, an infection can easily be seen on the films in your spinal fluid. We have primary care physicians that are like family doctors. You can bypass an unwilling spinal doctor to get more information on your symptoms by seeing your primary doctor. You mentioned they didn't believe you. I would be very suspicious of a doctor who told me that! I would schedule an appointment but just say you haven't been feeling well and when you're there mention that you recently had an SCS trial and haven't felt right since. They may investigate with lab work. You may want to monitor your body temperature for any fever changes. Did you happen to have the corticosteroid epidural injection/s before your trial? I'm so sorry to hear that you are going through this! Best wishes!

Thank you so much for giving us your input on this forum. I've had 9 surgeries here in the US. The first 8 were laser procedures that I traveled from NJ to Florida for because many people were getting relief at this Institute with the arthroscopic techniques used. I even saw NFL players one day in the general waiting area because so many of them had received good results there. It didn't work for me unfortunately, and I made my issues worse going back for more evaluations, which meant another surgery. My issues of spinal stenosis and discuss degeneration continued to get worse over the year that I spent getting these evaluations, with the Dr. putting a cadaver bone in place of my L4/5 disc that was now completely gone. I had unbelievable pain after this, with the Dr telling me that my brain was so used to pain that it was giving me this incorrect information, and I needed to retrain my thought process since there were no longer any issues that would be causing me pain. A month later I was at a neurosurgeon's office back in NJ, and the MRI he had done revealed no disc, no cadaver bone, and my nerve between L4/5 like a sandwich. He immediately scheduled a 4 level lumbar fusion from L3 to S1. I awoke from it with no feeling in my right leg. Upon his hospital room visit a couple days later, he explained that there was so much scar tissue at the L4/5 level from all of the laser surgeries and re-explorations that it prevented them from almost every angle they tried to get to where they needed to be. My leg neuropathology got much better over the next couple months, and I'm now left with a foot that has little feeling or ankle strength. That fusion was in January, 2012. I'm still in chronic pain, and can relate to the people on this forum who had pain Dr's refuse to continue their pain meds unless they agreed to try an SCS. I experienced this with 3 pain specialists. I'm seeing one now who is very understanding, and has suggested that I try the Nevro, but hasn't pushed it on me. He was trained at Brigham Young Women's Hospital which is highly respected, and has told me that it's essential to have an extremely competent Dr. do any SCS surgery, and that it should be your pain Dr. He has decided to only use the Nevro, after seeing the advantages he feels it has over the others he's implanted. I wanted to wait a year before seriously considering getting a Nevro, to see how his patients are doing months after their surgeries. He also said that for a positive outcome, you need a Rep who is experienced and extremely competent. I asked him if he stayed involved in the programming, as I've read so many reports on this site of people who never see their surgeons again after the implant, and are now totally dependent on their Rep for getting the STS programmed properly to address the areas of their pain. My Dr has the Rep in the room during initial meetings, only works with this one Rep, and is on the phone with him almost daily following and implant, as well as continued patient appointments. He has agreed with many people on this site of the opinion that a really experienced REP who contacts you daily and knows what to try next can make the difference between a successful experience or horrible failure. I asked him if it seemed that the Nevro wasn't helpful for people with tons of scar tissue from many surgeries? He told me that Failed Back Surgery Syndrome is the same for anyone that has it, and that he hasn't found that to be an issue. Do you agree with his opinion on FBSS, based on your experience with the implants you've performed?

Ypu are very correct and I believe every word. May w016 had implant trial for limb constant pain no back problems. Still to this day I have been trying to find out what is wring unfortunately mri shows minimal damage and they act like it is all arthritis the the breathig problem is your heart that was a coincidence starting after procedure plus the extended abdomen was a hernia which was ok prior? Well have spent lots of money on all these test and found to be negative? So are they covering up something maybe... Also my spine looks like it is not normal on the right side where I have all the pain and spasms. I nust want answers as I was fine when I walked in and not afterwards (back) I will say I loved the tingling in my painful arm but , had to ha e it taken out in 2 days because tape had ne blistered up and pain where wire came out. I remember another perso on here on complained about the abodomen protruding and was told it was fat! Well I've lost e0lbs because of not beig able to eat but little bit and stomach got bigger. It is still protruded out. I feel I have some kind of problem with muscle atrophy as my back is differen (leaning or drooped ) on on side as well as neck shoulder bone up and out on that side. Wish I would never had went to get this procedure and IT WAS VERY painful for me!

can you give an update on how youre doing? I am just joining this site now. And by the way, your aggrivation  with lack of narcotics is completely shared by myself! I have been in excruciating pain 9 months and never once prescribed a narcotic.  I had some left over Tramadol's from a 2015 injury and then used up my dog's tramadol.  Having tramadol left over from 2 years ago is telling in itself as to my lack of drug seeking behavior! What drug seeker lets a drug expire?  What I have done is turned to  alcohol so I drink every night now.   But, I've been to 13 doctors and all of them tell me narcotics are not good for me.  And, they don't work for chronic pain.  So, I've gone from a gainfully employed woman to losing my job due to the pain.   But GOD forbid one of those 13 doctors give me something for pain relief other than the neuro drugs ( cymbalta, notriptyline, etc ).  Waiting for my pscych eval ( which I find degrading and insulting, as NO other medical implant requires one ) and then trial of the DRG.  

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Hi JaiHari

Sorry about you losing your job, Alcohol is not the answer

I'm in the states, where are you?

I had a pscych eval for my spinal cord stimulator implant, last a whole 5 mins, dr was typing the ok as we spoke.

It's not working so after 5 months Im having it removed.

The drs here are very cautious about giving narcotics but they do.

The federal gov't is cracking down on the giving of drugs and can

only br changed everey 30 days while you are in front of the dr.

I wish you all the best, did you try acupunture, it helps some.

I have phn for 3 yrs

God Bless you

Hi JaiHari! The struggle is real and you are not alone! I'm um okay. I wish I could say that after 2 months with the Nevro permanent implant that I'm completely fixed and without pain but it just isn't so. I'm finding that the implant does not work on any type of deep joint or bone pain. Which is the pain I really wanted gone. My tailbone is always in this excruciating state of feeling heavy, aching, deep deep never ending pain. I feel like the trial was a success because the trial leads were so much closer to my injury site. After 3 major surgeries they told me I had too much scar tissue to put it that low for the permanent so it's at T8. I truly believe that has made all the difference. My rep has been awesome my doctor is still very sweet and helpful. Any doctors prescribing narcotics fall under federal investigation no matter what. Found that out recently. So since you are about to have your psych test I'm assuming you have not yet had the permanent placed. Can you give me some of your back ground. What kind of pain is worse for you? Muscles? Joints? Nerves? All I can say right now is bless your heart! I'm not a drinker at all. But i totally understand when pain is that intense you have to meet it and beat it back with any thing in your arsenal. I was just told this by my rep...."doc knows you're in intense pain but the medicine he would have to prescribe for such intense pain is a steep hill. So he is only going to give you enough relief so you don't destroy your life being on MEDS such as morphine or Oxy." As for the mental exam it's a piece of cake just stay calm and be honest. I'll be watching the site as I have kinda just giving up on finding answers. On a very good day I have about 20% reduction in pain for my back and have about 60-70% leg pain relief. I know that looks like a lot but I was never that concerned with my leg just the never ending back pain. So from a 9-10 baseline score I'm about a 6-7 on the back pain scale everyday. I'm looking forward to hearing from you and I will check the site more often. I don't know you but I'm praying for you!