THE BEST SPINAL STIMULATOR?

Thanks so much for your reply, sorry it did not work on you, hope you get relief.

Bob

Oh wow, you sound like me,. I will find out tomorrow if they are going to have to extract it. My trial surgery was a success by 70%. However, my pain is widespread and we were able to create the best program for my back, after 2 ALIF, five weeks post op anterior and posterior fusions, I was a passenger in a MVA. It's still pending the lawsuit against the fault of the drivers, two people were " at fault. But anyway, the past 3 years I've been through every option and working with a CBT therapist and it's helpful and I will not let anything bring me back to where I used to be. The SCS trial was a miracle to me, UNTIL the surgery in December, I have a strong sense that the rep mislead my surgeon and it's not exactly aligned with the trial surgery. We have spent 6 months, 4 Medtronics representatives and three different Physicians and I will be going over my CT SCAN report to discuss my options. This has been the most traumatic surgery recovery of all of my 15 years. I have to say I empathize with you and I feel and share your same experience with this. I don't know how you are emotionally, mentally and physically handling alo of that??I have been wanting and waiting for the day when I have normalcy unfortunately, I feel depressed at times. A lot of personal and family setbacks, going through a divorce ( my husband bosses wife was at fault 2013, MVA) so basically my husband decided to save his assets versus be supportive through this process , marriage was a success and commitment. He defines Money =Success. I was only with him for 6 years and I wouldve supported him in anything . I am so honest, I feel let down by my expectations. I have vibration in my ribs and the device has done some odd physical symptoms of pressure or inflamed. I am scared of removing it even though I need to.

I appreciate you sharing your story and if you would like to start a private conversation I would love to hear any of your feedback and wisdom. Thank you. I'm sorry that you have been experiencing complications and more pain, I have a lot of the same emotional and physical obstacles so please let me know if you want to keep in touch and support one another. I hope you had a nice day. Take care.

Regards

Amanda

my pain was worse from the wires than my normal pain. i couldnt tell if it was cutting down back fron from terrible surgical pail from just the trial. very disapointed i dont think I could of handled the disk implant anyway. any suggestions?

One thing I would like to add about the recharging. I do have to set aside about 45 minutes daily to "hook up". It's no big deal tho   Marie

Good for you, we need more inspired people to get us through the days of painful and emotional days of disappointment. I have an amazing Surgerical Team, I just don't believe the " Manufacturer rep gave my surgeon the exact same placement of the paddle leads compared to the trial. My trial procedure took two separate percutaneous with 8 electrodes on each one of them. Theyou staggered the 2nd one higher than the original bc I was not getting the results that we should have. Once they put the second 1 n Hyer it went off two more vertebrae is that's when I was able to find success and stuck with one program 97% of the week that I had it on. I then went back to you my dr. He then had hey specialist help me psychologically evaluated and wish I was able to being labeled as a candidate a month later had the surgery and after full nine weeks of really healing and everything had scarred down, that's when I knew something was wrong. 6 months and 4 representatives from the manufacturer of the implant have not been able to duplicate any and I mean anything close to the trial surgery that was 70% or 80% pain free. I do my homework and I have investigated the entire process and I have to say, my CT SCAN confirmed the two seperate surgery placements are not even in the exact area. Due to the lack of communication and negligence / documenting everything from the first complication trial placement , I believe that I would be feeling so damn much better than I do. Vibrating ribs and stomach doesn't cut it. Today I was told that we need to extract it and I am feeling so much anger and disappointment bc I had the best week in my life and I really believed my life was going to start over and I couldn'the wait until my quality of life was improved afyer the implementation of the neurotransmitter was completed. December of last year and I am not so sure that I'll just leave with a bad attitude and put on a pity party bc I have to be positive and be strong enough to keep going, I have the best doctors in the country and I feel that I trust they are doing everything to help me get where I need to be.

Sorry for venting but I do appreciate your uplifting spirit to help others have an open mind.

I always told myself or my friends that I have to charge myself. Walking neurotransmitter. I have never heard of the implants that you are talking about. What is that and who makes it?

Not sure if my last text came thru so will attempt again.  There are 3 implants that I know about: Boston Scientific (? Not sure about this one), Medtronics and Nevro , which I have in place.  They do not solve the problem, just hides it and makes your life more bearable. They told me that if it helps your pain 50% it is considered successful.  As far as charging myself, I do. Once a day I have to hook myself up to a power Pack (a DC recharger) that has been charging during the day and put it over my area (my back)where the Nevro is implanted . (Think of an electric tooth brush)  I set for about 45 min.- 1 hour.   This is more successful then the surgery or the injections for me.   Good luck! 

Maria04822,

Hi just wanted to tell you I'm happy that the Nevro is working for you, unfortunately not for me, it was new in Connecticut back in September 2016 so there were mistakes made, like I said I had a revision of battery duee to the battery being in the wrong spot and pushing through my skin and not did it hurt, it made me alot worse, I had high hopes for it cause the trial was ok not alot of relief but some, now I feel like I'm in more pain than ever, also there's is one called St. Jude's which I was supposed to be getting but they decided not to do it yet and leave this Nevro in, I'm hoping it well work for me, if not I just done with stimulators. Best of luck with your pain free days and also with cutting back on meds. Wish it worked for me

Someday I m hoping something will come around before my end of days lol

Take care cynthia ( Cindy) from Connecticut usa

I don't have a lot of "clot" up stairs but will say a prayer for you. Good luck. Marie

Marie04822,

When I was charging depending on what they have you at, meaning how powerful it set at the longest It took was about 45 mins because I forgot a couple of days but if I did it every day same time it would only be 20 maybe 15 mins tops for charging.

I was like this is to funny I feel like a phone or computer getting a charge lol.

Best of luck

Cynthia (Cindy)

Hi Marie! I was chatting with you a few months back when you were considering the Nevro. It's good to hear an update from you. The stomach flu after surgery....you poor thing! When you say, "It cools down" what are you referring to? If you don't feel the battery, (Thank goodness!), then is it he surgical site that's still giving you pain from the surgical inflammation? Two months post surgery? I think you were wise in going to Mayo Clinic. The skill and experience of your surgeon can make a world of difference. My current pain Dr. trained at Brigham Young in Massachusetts. They also seem to have all of the pieces of the puzzle needed to get as much success as possible, with a lot of experience in implanted scs's. Local DR's seem to rely on the manufacturer reps to take care of you once they've done this implant.

Hi Alicia. So sorry for the disappointing surgical results. Been there 9 times with back surgeries, but not due to an SCS yet. So, is your surgeon going to try and duplicate the original placement of the leads in the successful Medtronic trial that you had? It's so exciting that you had good results from it, even if only for a week. I've read of many people on this forum who had a wonderful trial with the Nevro, but total failure once it was implemented. I believe it only has two leads as well, while it sounds like the Medtronic has more. I'm disgusted that these surgeons aren't taking a more proactive role in getting these things implanted correctly specific to their patients, and relying so much on the Company Reps for vital information, getting the most successful results.

That's the problem, I had a difficult trial bc it took a lot of time and programming to achieve the pain relief in my upper back. I happen to have Fibromyalgia and Myofascial Pain as well as SI Joint Dysfunction and other spine issues. I had my first ALIF L4 L5 in 2003 however the surgery looks great on MRI study but it never helped my pain at all. It was done for absolutely no reason. Then 3 years ago I was doing yoga when I bleww out the disc below my fusion. I had the best surgeon in Dallas Texas that did my second ALIF of L5 S1 back in 2013. However, given that I was a passenger in a MVA accident only five weeks post op, that's how I began to start having pain in my Thoracic area and my tailbone etc. So, during the trial, I was asked what area to focus more on. I was on the table longer than expected. They decided to try a second percutaneous lead about two vertebrae higher than the first lead ( the 1st one caused vibration in my ribs). I was able to get about 80% pain relief as well as not waking up during the night throughout the entire 7 days of the procedure. It was amazing how much satisfaction and hope I had. I did not have to make any changes to the programs nor did I ever feel any vibration or sensation. I was on cloud nine, it gave me a strong feeling vs feeling weak, nor did I have any problems the entire week. A month passed before I had the actual surgery. About 4 weeks into recovery, I had spent time with 2 different Medtronics representatives on a biweekly basis and I kept getting excuses, " oh give it the full 12 weeks, it's still trying to scar down, it's your scoliosis etc. At the 8 week mark, I had a third representative try his own programming and we still didn't get anywhere. Finally, I went to a new pain mgmt Doctor who specializes in this and he brought in my 4th representative, which he who was able to find different programs that the previous 3 representatives didn't. WE got close but not exactly the same as the first time. After my CT SCAN and talking to my surgeon last week they recommend that it be removed completely. I have a very big inclination that the lead was misplaced as it was not explained thoroughly, because of the two separate percutaneous leads used in trial procedure. The second lead was staggered up with the first one and I have done so much research, I am Devastated. In wrapping up we spent a total of 6 months, four representatives and 4 different Physicians and it has not one time duplicated anything remotely close to the trial. I believe the rep mislead my surgeon ( my pain mgmt doctor isn't a surgeon bc he isnt a surgeon just does the trial procedure.) Until the second lead was inserted higher up, I would have never been a candidate for the surgery AT ALL. The procedure report was identified by the locations T5- T8 but is not exactly detailed which could have been IMPOSSIBLE for my surgeon to figure out and that's why there is Zero results.. The Medtronic rep is responsible for knowing what programs were successful and at what level of the tspine was to guide my surgeon to achieve duplicate results as close as possible. My neurosurgeon is only responsible for the implementation of the SCS. Miscommunication and poor accountability is what I call it. I got the district management involved, I didn't even get an apology for the mistake that I am paying for.

Hi Kathy, I was puzzled by you quoting my "it cools down" comment. I went back and looked up my prior replies because I couldn't believe I was referring to anything about my surgery or the Nevro. I wasn't.  I was referring to the weather in Arizona, where I live.   "I think when it cools down (if it ever does) and I can get out and walk..."   Sorry for the confusion.    Good luck with your pain management.  Marie

 

Kathy07828,

You are absolutely right about the Drs relying on the Rep's to take care of you after the stimulator is put in. I've had 2 Rep's so far that think it's going to work for me. I really highly doubt it, the dr already said I was a failed SCS, so I don't understand why these reps put you in a world wind of pain for? I'm just throwing in the towel now, I can't stand all my muscles hurting after the made the Nevro vibrate and days later a could still feel it and to be honest with everyone it sucked bad, I never thought I'd be in that much pain again.

Hope everyone is doing their best to be pain free.

Cynthia (Cindy)

Hi Alicia, I'm so sorry that you're unfortunately listed now as a "failed candidate for an scs." These professionals are so good at recommending procedures for it as casually as one would decide which topping they want on their sundae. Stories like yours are why I'm holding off on trying one. I also suffer from myo fascial pain and fibromyalgia, as well as a Highly Sensitive person, and from what I'm reading here, no it's, reps or the Nevro people are working on follow ups on their patients to see which conditions exclude a patient as even being a candidate. There is no accountability for anyone that's ruined our lives. They still get paid a lot of money for it too. Unfortunately, that seems to be the driving incentive for recommending these things to people desperate to try anything to help their chronic pain. The professionals are rewarded every time, whether a success or failure. So, forgive me, but explain why you were never a candidate in the first place? Especially since the trial worked wonders for you? (I frequently have pain pill foggy brain lol.)