Issues that required removal of Nevro HF10?

Kim,

I just have to comment on YOUR comment about the "charming" sales rep... 😃

I had to laugh at that one.

My rep was quite the casanova during the sales phase... so much so that I honestly feel that during the trial, it was nothing more than a placebo effect for me, because I have had this damn implant since mid January and i have yet to feel any relief, despite numerous adjustments to the various programs.

In regard to my rep, his entire demeanor changed, once the device was implanted. literally cannot stand to communicate with him. This is the same man I praised prior... telling everyone how wonderful he was and grateful I was to have him on my team.

Like a lot of the patients here, I have an extremely complicated case. My entire back is full of multiple issues. That being said, I do not have patience for arrogance or anyone who takes my kindness for granted or even worse, dismisses my concerns as a patient.

So now, my dilemma is.. should I begin the removal discussion? How bad is that going to be?

The battery pack is in the flank area, just under my ribs.. very often rubbing on my ribs. very visible from the outside.

The leads go all the way up to my neck. two lumps have formed in the lower cspine/upper T spine.. hard, painful... they say it's also hardware. uh... okay well it hurts, very bad. No explanation, or solution offered. they have butchered my back at that institute, over the years.

Thank you for Listening.

Sincerely,

Lisa

I was an eager patient-to-be with the NEVRO device as my trial was so very successful (70-75%). I, too, have been a pain sufferer for many countless years and have been on pain medication for much of that time, occasionally needing to increase an amount but not consistently.

Unfortunately, about three years ago, a truck slammed into the back of my car forcing me into a very large SUV, which began more pain in a number of areas.

The bottom line is after many months of physical therapy, any unfortunately, the result being that I have developed at least four conditions that mean there is no specific surgical treatment that correct or rectify my chronic pain.

My pain-spine doctor discussed how I might qualify for the NEVRO implant that could send signals to the pain center in my epidural area.

Everything pointed positive and the first of December, 2018, I had the battery and leads installed. After the proscribed time (6 weeks) the device was turned on.

Since that time, nothing worked, period!

After taking an Xray, it was taken and found that one of my two leads had fallen and was not ever going to respond so the NEVRO crew transferred their system to attempt to relink me up to the battery, etc. After another 4-6 weeks we found that my going through each level of all three programs, I wasn't getting anything other than minimal pain levels. I asked to have another Xray and it showed the second lead had also fallen to a level that they believed pain reduction wouldn't happen.

The NEVRO crew and pain doctor's assistant began discussing "revision surgery" to reset both leads.

As, there is no explanation as to how the first lead fell, I'm less than enthusiastic about a second surgery as the doctor and his assistant and NEVRO agent tell me there is no way to connect them at the top, plus, as I'm 5' (60 inches), the leads they insert to reach the L8, 9, 10 level, it doesn't take much movement to be out of pain reduction level plus, the medical staff failed to send me home with enough pain meds to take care of my post-surgical pain level, they said, on account of the amount of pain meds I had become accustomed to maintain my pain level prior to surgery.

This is where I am currently, do I have the revision surgery and hope it works this time, as there no guarantee that without my doing anything, the first lead fell, the other one did after 3 months.

Gee - doctors can be such ashes! A simple x-ray should show the displacement of your wires.

I went through the trial stage and I didn't feel much of anything, but when you are in constant pain you'll try anything in hopes it will work. I injured my back while mountain biking...in 2012 and since I've had 14 surgeries to try to fix a failed fusion. The surgeon nicked my L5 nerve with a scalpel and told me it would eventually go away....well it didn't.

OK. Now back to the Nevro. The first surgeon who was my pain manager implanted it and within a couple hours the battery pack slipped 3" pulling the lead wires completely out. He went on vacation. so for two months the wires were left dangling around my spinal cord. My Nevro Representative told me about another surgeon... who I think is a great surgeon put in the paddles that are attached to each vertebra so the leads won't pull out.

The wires stayed attached all was good there, but the battery pack quit working. I would charge it 100% and it would last maybe a couple hours. The couple hours didn't do a darn thing even when I had it as high as it would go. I FINALLY gave up... and the device did nothing but move around in my buttocks, causing so much pain my surgeon finally took it out. That was hell because all the muscle and scar tissue had to attach to the Harrington Rod. What really sucked was the Regional Manager for NEVRO, told me in front of my Fiancé"...that if he was my Representative from the beginning he wouldn't of recommended it because of my back condition was too bad. "Who knows a great attorney" because I went through so much pain for nothing!!! Thanks for letting me vent.

BAB

Hi, my is Kelley and I am experiencing much of what you did and so happy to find someone else like me. I’m very curious to know what you ended up doing as your post is five months ago. I had the Nevro SCS implanted April 12, 2019. The first lead had fallen immediately he said maybe even rolling off the surgical table to the gurney. I was getting some relief but only if I did nothing If I try to exercise or do small things around the house the pain became unbearable. I went in last Tuesday and they looked and x-rays that they had taken and both leads had fallen. They now trying to talk me into another surgery using the paddle leads, which I understand is much more painful recovery. I gave the first recovery a full 12 weeks of not bending twisting lifting etc. I personally don’t know if I can emotionally handle that kind of chronic pain again . I am about at my wits end on what to do and will meet with my pain management/surgeon this Tuesday. I am wondering since mine is just a herniated disc pressing on the sciatic nerve if I can just get the herniated disc repaired and get them to pull all this NEVRO crap out of me?

please drop me a note if you can!

Kelly, I experienced the issues as you. My first implant was a disaster from the beginning. My pain manager didn't have a clue what he was doing. One week after the trial the battery pack slipped 3" and it left the leads just dangling by my spine.

I had another doctor put it back in and he used the paddles. The bottom line this Nevro just doesn't work, unless you had a snubbed toe. I had the doctor remove the whole device in February.

I had knee replacement surgery Friday, and since then I still have severe pain especially in the right buttocks.

Bradley,

I hope your knee replacement is starting to heal. Thank you for taking the time to write me about NEVRO. I am so disgusted with them because it is giving me no pain relief at all and I have not been truthful about so many things, I am NOT their poster child! I am curious did insurance pay to have it removed or did NEVRO help with the cost ?

thamks,

Kelley

Hi Arlene, I had an implant that was removed, partially, after 3 surgeries to remove it, wash it due to infection, replace the same unit, and then remove the battery pack and the spinal unit. However, the doctor neglected to remove the leads. I now have a hole in my spinal cord and the leads are still running from my hip to my spine. My pain is about 10 times worse than before the implant. The representative was in the room for my surgery and directed the doctor in all aspects of my treatment. I was never told he held a medical degree! LOL!

I can't sit longer than 15 minutes nor walk any distance at all with out my hips and back killing me. I was walking 6 to 7 miles a day before the implant. I don't recommend the implant to anyone especially if you live in Pennsylvania. My neighbor got hers a week before me and her battery pack burns her every time she turns on her unit. It's crazy and my new doctor says sue the heck out of them. Good Luck to everyone.

Hello: I really feel for all of you, I have read all the posts, and it seems as if you all got the shaft, in one way or the other. For those of you who can sue, I would, and if money for the attorney is a problem, try the Attorney General office of your state, or even go to the Federal level for help legal wise, and make sure you have every tiny thing documented ( dates/times/ Yadda, Yadda, Yadda ), and go public, ( National) and I don't mean online social venues, I mean to go in front of cameras on all the major Networks (PLURAL) like 60 minutes, 48 hours, Nat Geo, Smithsonian, look around, there are there one's that have a big audience and ears and no joke talk shows or not for entertainment since the manufacturers hate that kind of publicity, and will at least maybe try to settle much more quickly. The money will not take away the pain, but may open you up to avenues that your insurances will not touch or pay for, but having lot of money makes a big deal in the type and quality of care you can get ...how do the rich get really sick, and recovery is fast and done right the 1st time, or they keep trying until there is satisfaction, because you are choosing, and asking and triple checking and paying and you have much more control, and may even lessen the pain to tolerable levels. I was looking into many different SCS systems and I have stopped, for now, l because they are too easy to push, and almost any surgeon or ' salesperson ' ? can do the job, and you are not mechanicals, you are humans, and fight to be treated as such to the point of that you are satisfied, and satisfied PERIOD. I do not have any answers, just some ideas that may help some of you, and wish I could do more, but I have Diffuse Osteoarthritis and it is going all over the places, anywhere there is cartilage, and feasting on it, and there is no cure. I really feel for all of you, because we are all in the same kind of boat, but just different areas, and pain makes you nuts. Do not stop fighting.

Hi Stanleyzee,

Thank you for your very insightful, helpful response. I hadn't given thought to the media yet, I haven't gotten over the shock of my back full of leads and the hole. Lol!

Yes, I try to stay upbeat about this or the pain will beat me down worse than it does and I don't plan on surrendering.

I will pray for you and your pain. May you be blessed by God with pain free days in the future.

Mel5566

Hello to Mel5566 and all: Insightful I am not very, but do not think inside any box...pretend there is no box...no walls, no barriers, nothing you cannot try, no-one you cannot talk to...there are no barriers except the one's we artificially make. I do not advocate breaking any laws,. but some are a bit dated, and do not fit or have any use any more. Go around, go under, go over, go through, and go the other way. That's how I TRY to live, and I do not want to hurt anyone's feelings, or what they have tried, but just pretend you have a canvas the size of the Universe, and it is wide open, and clean as a whistle, and now start putting things on that canvas, but nothing really sticks. Every-single-thing is a let's see what happens....oops...nothing worked, tear it all down, and start all over. Keep what did help or worked...add to it in a different way, turn it, reshape it, go with it a different way. All of us are too valuable an asset to the Universe to be put in a corner we do not want to be in. Life is too precious, and do not let someone else take parts of it from you.

Stand your ground, be polite, and say no when the no is the best response.

Reach down deeper than you have ever, ever, ever and ever again gone. Do not worry what others think, they are not you, or inside you, and cannot be.

My favorite saying goes something like this: I will respect someone who will help me, and has ABSOLUTELY nothing to gain to add to their game. There are people out there that will do this, because they think the same way. We are all special, and any inkling of someone taking what you need is a walk away from ASAP. Yes, we all have something, but some of us have things that are too hard to overcome. A stubbed toe is not the same as no leg. My very best to you all!

Mel5566: Think about it...would U be more sympathetic to someone who can SHOW the WORLD or THE UNIVERSE their HOLE from botched surgery, or show the healed scar that the camera has to ZOOM in on,....remember no box...shock value for the ma$$e$.

Anyways, I want to thank U and all for their prayers and positive thoughts, which help more than anyone knows, and I am tossing every single one in this group, or anyone out there with chronic pain an extra bunch of prayers for 2020 ! Let's make 2020 and on the COMEBACK YEARS of the pain patients WHO ARE not going to take it anymore!

so interested to see if this is what is happening to me... the leads falling. I had surgery in January. I felt like I was getting "some" relief on a few settings but since have developed some hard lumps around the incision site where the leads are (upper t spine/lower c). Very hard, painful to touch and painful inside (deep) - also visible on/from the outside. Rep says it's "hardware". I no longer get any relief. Doesn't matter what setting I use. i also stopped journaling. Seemed pointless. Follow up is Wednesday.

Bradley,

Did you happen to get any answers on this?