Issues that required removal of Nevro HF10?
Posted , 52 users are following.
Hi y'all -
I am so grateful to have just found this site and hear y'all discuss your experiences with the spinal stimulators. I have been in pain mgmt tx for 6 years after a catastrophic accident. My anesthesiologist/pain drs pushed for me to get a stimulator implanted in my first year but I read some horror stories and now my dr is saying this Nevro HF10 is much superior to those earlier products and treats the pain in a more complex, fuller way.
I wondered if anyone had needed to have their device removed? My dr said this device (small device he said...) would be implanted in the flank area, above the fanny and that caused much fewer issues than devices installed alongside the spine. I read the horror stories about removing those but now read that some of you are having pain in the flank site too.
My dr does not provide hardly any info and everything else I read seems more like advertising until finding this forum. I'm curious about how this really helps and what it means for your life. I would be so appreciative if anyone would answer some or all of my questions. I know I have a lot so I understand it may be a lot to ask. Here are some of them: Do you have an outside device that is attached to you? This may sound silly, but are there wires coming out of your implant area? Can you shower, swim, normally? Does the device poke out or look noticeable if not dressed or dressed?
I am scheduled to have my second radiofrequency lesioning on my lower back in four weeks and am scheduled to do the 5-day ketamine outpatient treatment in mid-May. I have had at least 10 nerve injections to try to relieve pain and only have ever found minimal relief, all while my CRPS and nerve damage worsens. I take narcotic pain meds and have for 6 years now and would LOVE to get off them or lower my levels. I returned to grad school two years ago and am about to graduate next month and the increased mobility caused the need to increase pain meds and increased my pain. i am so worried about the ketamine tx and know that this is not part of this thread, but my point is that I am desperate to find relief. I don't want to turn to this "new technology" version of Nevro and have more hassles, less money, and the same amount of pain, so your thoughts and insights are much appreciated.
I will continue to read and appreciate everyone's honest and forthright threads and responses. I am learning more here than in several dr's appts!
Thank you and best wishes to all of you in your pursuit of a minimized-pain life!
Chris (in Georgia, USA)
10 likes, 107 replies
riley90188 chrisw115
Edited
this whole site is quite confusing... FACT = CLASS -ACTION LAWSUIT should be filed !!! against Pain Docs installing NEVRO's and NEVRO!!!
Only 171 participants were in the NEVRO Trial study. Funders that put up $$$ were NEVRO affiliates. We ALL need to have this investigated ... LOTS of "Unethical" practices ... and they did not tell the TRUTH. Withheld pertinent info from trusting clients.......
bradley_08701 riley90188
Edited
I've been a damn lab rat for this Nevro device....I'm searching now for council. After the hell I went through I started investigating and paIn management doctors are getting huge payoffs, trips, and who know what else.
riley90188 bradley_08701
Edited
yes - All you stated is correct where are you located (?) I'm in the USA and I haven't heard personally of anything positive from the NEVRO Implants.
CHEERS,
bradley_08701 riley90188
Posted
I live in Southern California. I'm going to get something going here. First i had a unqualified surgeon that left me hanging for months in horrible pain. Then a qualified neurosurgeon put in the paddles and then the battery never worked. Then the device manufacturer wouldn't return my calls.
Desert_Guy riley90188
Posted
I`m in Vegas. Just a quick update, I finally forced my doctors hand, and Nevro is GONE. I now have a Medtronic pain pump. It has not been in long enough for long term opinion, but it is working, not completely, but at least it's something. I will say this, both have adjusting periods, but at least it's an improvement.
I do want to say this to everyone, no matter what they end up doing, be honest with yourself as to the effectiveness. Obviously all of us are at a fairly extreme level of pain to even be here. Whenever we get a new treatment, we all are desperate for relief, so it is REALLY easy to be overly optomistic with results. Please be honest with yourself about your levels of pain. God knows how bad we want anything to work, so it is very easy to over-estimate any course of treatment.
kperkb bradley_08701
Posted
Isn’t that the truth ! I think it’s all a game with them. I’m trying to get mine out as soon as possible. I turned it off a week ago and hadn’t felt this good in a long time, as my leads had slipped and I was getting stimulation in the wrong area .
MondayLisa bradley_08701
Posted
omg!!! really? no wonder my doctor and the rep seem like they are buddies! i was treated like a princess during the trial period, for this implant.. as soon as i got appeived for it (literally, day of surgery) the rep's attitude completely changed.
MondayLisa
Posted
*approved
kj41255 chrisw115
Edited
I have just came across this site. My doctor want me to get the implant, any information good or bad would be greatly appreciated.
thank you
riley90188 kj41255
Edited
You want trouble --- get a Nevro and you will just BEGIN Your Real Troubles. And the Pain like you "Never knew existed" Wires can come loose and relocate on their own. Battery pack moves all over the buttocks area where it was suppose to be attached. The thing is very unpredictable.
Wording STRAIGHT from WARRANTY (which you will "not be given" until permanant one placed in you) --
And this Direct Quote:
"The human body is a hostile and unpredictable environment. Components of the Sensa implanted into this environment may fail during or following implantation for any number of reasons, including but not limited to: lead/extension dislodgement. damage or breakage, insulation breach, migration, erosion, implantation or use, medical complications, body rejection and physiological variations in patients,"
You may want to get your copy "in hand BEFORE" You have it implanted permanently....
just a thought !!!
Best Wishes in your hopefully WISE Decision (!!!)
Car in TX
kj41255 riley90188
Edited
Hi
Thank you for your reply, This is not the only horror story I have heard about this very expensive procedure. I am on Lyrica, Norespan, Endone, Celaxib, Panadine Fort and Endep ( for * years), you would think that with all this pain medication I would be pain free but this is not the case, most day I am in agony!!!I have had numerous procedure that work for a week or so then my pain returns, feels like it is worse but I think that's just a trick of the mind due to experiencing no pain for a short period. The nervo implant is my specialist lastest "craze". where I live its in its Trial stage and my Specialist is one of a few Doctors that are allowed to do it. For the "privilege to participate in the Trial it will cost $22000, which if it works I would find the money somehow. I have the feeling that if I don't participate then my medication will be withdrawn, with the new laws about all my medication (government has made it just about impossible to find a Doctor that will prescribe them) I will have a hard time finding a new Doctor, and even if I could going through all the tests again would just about "kill" me. If you come across any successful option for a pain free live I would appreciate the heads up.
Thank you
riley90188 kj41255
Edited
Make sure how much ($$$) your Doc receives per implant. Also check to see how much kick-back he receives from number he implants. Some docs are being pushed to massively implant incorrectly. Also check out credentialing of facility being used to insert implants. some are not credentialed appropriately. STAY on your TOES and verify, verify, verify ... The Real Good Doctor that I choose to remove mine, said mine was improperly placed and causing the vast amount of my problems that I'm presently having. Where are you located? Some docs are letting ($$$) cloud their vision. My heart goes out to you, I know what pain does to you, physically, emotionally.and in every way. I live it too. But I will pray for all (You, me and others in constant severe pain). Do all you can to make the best decision for yourself, but check out the things I mentioned. My doc became one that fogged his brain with ($$$$$) signs, Also remember the NEVRO Reps are nice, BUT they are Company People. (They too make very good $$$ off of chronic pain people like us. This needs more Clinical Trials here in the US) Don't let them use you as their guinea pig -- they were me !!! ASK Questions, even though extremely exhausting !!!
BE AWARE
kj41255 riley90188
Edited
Hello
I am in Western Australia your right the Reps are Company People the two I saw were nice young girls that were clueless when asked the hard question, and anything relating to chronic pain, but they were good at sprouting statistics!!
There office was inside my Doctors Surgery (kickback Much!!). my Doctor suggested that I get Hospital insurance for a year, so it would be fully covered except for the $1000 out of pocket expense, I looked into that ( I am on a Disability Pension), I would have to have the cover for the year before I am covered for the op, The cover would cost $ 170 per month (for the bare minimum cover) the Operation cost a little over $23000 $3000 going to the hospital the rest to my Doctors this doesn't include what ever he get from Nervo. through out the years my Doctor has had several "latest tech and solutions" to relive me of my pain and I have tried them all, some leaving me with more pain, I can only hope that before the year is up he gets his hooks into another "brilliant" idea to rid me of my agony!!!! I was hit from behind by a car, that drove off and left me because the driver was late for an appointment and he didn't think he hit me. Now you would think the driver was a Young careless person. He wasn't he was an 65 year old retiree that should have known better!!! that was * years ago. I have lost all feeling in my left arm and hand and my feet. (weird feeling) but the worse is the unrelenting pain in my back and neck!! remember those Doctors and specialist that try to convince you that the pain is in your mind to such extent that you feel you are losing your mind!! all the Doctors, Specialist and People with their opinions that answer No to the one question that trips them up everytime- 'Have you been in this much pain" .. My doctors got the most horrified look on his face when I told him sometimes my pain meds (and there are a lot) work so much better when I take them with Whiskey
, he was afraid that I would end up Stoned (which was the Point) my liver is shot but at least I was happy!!!and on that note I thank you for your reply and help, it is really appreciated
bradley_08701 kj41255
Edited
Hello,
All I have to say is BAD. The stimulator needs to be reevaluated by the FDA. The manufacturers and the doctors who get kick backs are happy and rich....the patients that go through the process are the ones that suffer.
The best day of the implantation was the day my surgeon removed this piece of crap.
I've lived with chronic pain for 12 years now and you trust your doctors for new things that might lead to some relief but they know ahead of time that it's not going to help other than help their wallets.
Shreveport chrisw115
Edited
I am considering this but need to find out more. I have issues in all three areas of my back and have been disabled for 18 years. My pain care dr says the only one that might work for me is the 5 days of hospitalization with fully being out the whole time. I do not think this is offered in the US.. So am trying to find a clinic in Germany....Thanks for any info anyone can give me...
riley90188 Shreveport
Edited
A word of mouth told me that there is a large Orthopedic Surgical Group located in Bossier / Shreveport
area that has very negative feelings regarding the Nevro Implants and their Surgeons have been contacted to "Remove" the awful problems caused to patients from the Nevro Implants. I am not located in that area but have a contact that has told me this from that area. - I happen to be located in N TX, USA !!! And I am a "Very Unsatisfied (PAST) Nevro client". It took away two years of my Life and made me LOTS worse. I'm improving since it has been REMOVED from my body. The wires (it was documented ) relocated and moved around in my back / spine area - also sent electrical shocks throughout my entire back area: (Upper, Mid, Lower Spine).I will NEVER give any Positive remarks Re:NEVRO. I would not let the MD that placed implant in me ever go near me ever again or not anyone connected with his office or practice !
I found a "Superior NeuroSurgeon" that agreed to remove the implant and all it's wires from my back. that was a real Blessing - He also stated that it had been improperly placed in my body.and was causing the most recent problems that I had begun to experience. I continue to have some pain, but not as bad as when I had that NEVRO Implant. I can NEVER give NEVRO any positive recommendations.
Think of using one of the old -fashioned external TENS machines to help with pain and / or the Lidocaine Rx patches to assist with pain.
Continue to explore, explore. explore ... ask questions, questions, questions
I was not a typical patient that any MD should have placed an implant in (U may be; I wasn't)...
My Previous Pain Doc located in N TX Use to be a good MD & use to care for his clients - he changed and got caught up in filling his pockets with cash - I believe he will be his own worst enemy without me doing anything against him. In my Senior Life I have witnessed people that have done wrong doings, it will come back to get them in whatever is best from the pain and heart ache that he personally has dealt out !!!
Many Blessings to you in your search for pain relief,
Would love to hear from you again re:your journey.
You have my prayers,
CAR in TX
Shreveport riley90188
Posted
I have had issues for 18 years and been on Fentanyl as well as breakthrough for 18. I also am a patient of the MD group you referred to. The biggest thing they stressed to me 2 weeks ago is that if the pain is at all bone related nothing has much chance of working. They rate half of mine as bone related and the rest nerve related. As of last count I had nine spurs pressing on my cord as well as Severe lumbar stenosis. Neck pain is from two neck surgeries in 98. Now I am bending over so much I need a rollator and am heading towards a wheel chair and that means moving as my doors are not wide enough. The other option is Cannabis oil as there is a pharmacy opening here but am not sure how that will impact my pain contract. I tried it once in the seventies and ate everything in the house and hated not being in control! So i would want a strain that is light on thc.
Been through tens, lidocaine, shots, years ago... No real help... Once on fentanyl i could really do physical therapy and 2004-14 had 10 years on a cane then the lower back began winning the tug of war.. Neck wants me to be pushing back. Lumbar issues want me going forward. Toracic spurs -- who knows.. LOL
Next appt is Dec when the Marijuana pharmacy is opening and I will breech it with them...Thanks for your feedback...
matthew78926 riley90188
Posted
Riley.
Just because YOUR experience was bad does NOT mean EVERYONES WILL BE.
Stop spamming this page.
I personally know two close friends , both 100% disabled and now CAN WORK FULL TIME AND GOT OFF BENEFITS.
Just because you had a crappy doctor and a bad experience does not mean thats how it is for everyone. It seems you might have some mental health issues as well which also makes someone not a good candidate for such a device.
I am getting my trial done in 3 weeks. And your little comments isnt detering me 😃
CHEERS
riley90188 matthew78926
Edited
We are all a bit mentally unstable with chronic pain; I obviously was (a Great deal mentally unstable) when I got my NEVRO Implant, otherwise I would have not agreed to having one implanted inside of me.
Cheers,
craig19661 matthew78926
Posted
My first ever post here may blow up on me, but i haven't seen a post trial/implantation update from "cheers". I do hope it went well, but...