Nevro hf10 anyone?

Hello to all my British friends

I'm writing from across the pond. I had an unfortunate outcome with my back surgery that I had 8 months ago. I have been suffering chronic foot and left thigh, calf burning pain ever since. I didn't have this pain prior to surgery. I have deduced the either my surgery was not necessary, or wrong surgical approach or the surgeon made a mistake. Of course I wish I would heal from it and get on with my life. I'm only 48 years male. Was very active and healthy beforehand, and handsome according to many ladies (and men) around my age. My point is that I'm miserable in pain and very concerned about my future and that of my family and friends. I'm in pain management with lyrica 300 mg per day and oxycodone 15 mg 3x per day being the main meds to try to help relieve me. I had a rather odd issue. I had a large disc bulge at T12 L1 and advanced canal stenosis at L2 L3. So my orthopedic surgeon did a T12-L1 posterior laminectomy disectomy with interbody fusion and instrumentation and a L2-L3 hemi laminectomy on the left side. I think the T12-L1 level is what got messed up as the S1 and S2 nerve roots connect near there and the pain I have which is burning pain is along those dermatomes.

So I have been researching and most surgeries done at that level come from the front (anterior) or side (contro) approach I suppose to avoid compromising the neural elements. My surgeon claims the approach was appropriate and that he did NOT hit or retract the spinal cord. Of course how do I know other than I have neuropathic pain now. So I'm pretty much done with him other than filing a complaint with the health department and possible legal action. I can walk on my own but her pain is constant and miserable.

I will be seeing a top University level neurosurgeon in the Philadelphia area to get another post op evaluation and possibly more Imaging such as a ct myelogram which I never had and may need due to the metal in my back now. It has not been advised I have further surgery as I have been told that area is fraught with complications. None the less if it is advised I may go with it if I can be assured it would help. There may be further compression of my cord or nerves that the original surgery caused. Or there may be nerve damage that surgery would not be able to address. I also still hope I can get better in time but I'm losing hope for that prospect given its been over 8 months.

So that leaves neuromodulation. I've been told and read some good things about these devices. Has anyone got experience with the Nevro hf10 unit? It's relatively new in the USA and I read good things about its ability to help mask nerve pain in the legs and even the feet. Any other opinions or advice on my situation would be appreciated. Thanks to all. I never thought I would be suffering like this. I admit it's very sad and im frankly very scared. I cry at times thinking about my situation. But everyone tells me to focus on the solution and not the problem.

Thank you all

And good luck too


28 Replies

  • Hi, sorry to hear about your spinal issues. Makes me worried as I have issues in the same areas and they are still debating treatment types.

    However, to get to the point, I've tried a Tens machine ( same thing as a neuromodulation machine) overhear on my lower back and it worked for about six months but after that I'd run out of adjustment on it and I started to be more aware of the pain. That's not to say that you'll only get six months out of it yourself. Everybody is different and when I was handed mine at the clinic there were people there who hadhad susuccessful pain relief for a couple of years and were just there for a checkup.

    The units that you can purchase in the UK start at £25 approx as they use them for pain relief during pregnancy as well so economies of scale kick in. Any of the decent cheap ones will do the job if you have to purchase it yourself. Consumables will be the sticky pad electrodes and the batteries.

    Lucky over here in that the NHS supplied a rechargeable version and a months supply of pads for free.

    If you do get a cheap version make sure that you can use any brand electrode pads and are not tied into their own brand.

  • I had revision to my Spinal Fusion (heads sheared off screws) through front once rear was stabilised (still 1 screw headless and insitu : too dangerous to tap n dye out). My confusion with your case is why you think your fusion could have been Anterior when it is my understanding that men are not given Anterior lower Spinal work due to permanent damage caused to penile function???? Can anyone else out there verify this or is it old info?? Good luck, I had lots of different nerve pain after revision, some gone now some never's just a fact of life that invasive surgery will cause other problems ie. Neuromas, New blood vessels bone Graft Harvest site damage......There's stuff in there our body wants to expel....foreign bodies it's our bodies job to try and expel and it forever will try to do that u successfully causing all sorts of probs......I wish you luck.....😄

  • Hi

    The surgery could also come through the side. Through the ribs. Do you think I can still get better in time with regards to my nerve pain.? My pain is very bad in my fight. Would revision surgery be helpful for me? Maybe the annulus IS pressing my cord or nerves now. The pain is bad. And I need something to fix it.


  • Well All I remember is the 18mnths of agonising pain in bone graft harvest site as donor bone would not when it finally decided to grow was huge relief of pain.....I've now got about 20 neuromas that used to fire all day long, for which I am still on lrg doses of Gabapentin etc.....Menopaused slowed down the firing rate tho they are still hot to the outside, so constantly protecting certain areas of my back from banging against anything. Have had the referred and burning pains on and off over the years....things will never be as before surgeries, but my team made sure I understood that my pain would probably increase after surgery....they were just aiming for a stable fusion which I have had since surgery for approx 20 yrs......the pain is another kettle of fish.....I have found Indocid Suppositories a huge help in my path as oral antiinflamatories just a no go due to stomach issues. and boosts pain killers settling stubborn pain. Don't know about side fusions......all I know is if you thought you would have spinal surgery and be pain free.....then I think you were mislead....

  • Well. I didn't have back pain leading up to my surgery but was experiencing leg weakness which came suddenly. Mri should large disc bulge at T12 L1 beginning to press my spinal cord. The surgeon did a posterior laminectomy and I guess thought I needed the fusion due to the natural kyphosis at that level. So it was for stability. Now I have nerve burning pain in my feet and left leg. I did not have this pain prior to surgery. I have regrets now about this surgery but I can't go back in time. I hope the pain will get better over time. Thanks for your response.

  • People are very quick to judge the whys and wherefores of us having surgery, but I'm fairly sure they would not have operated on you if they did not feel sure of the 75% chance of a positive outcome that is now a worse situation than being judged by others would be justifying it to would have been in a fairly precarious situation for them to risk surgery when you were in no pain...... A worse situation than being in pain for the rest of your life would Mayb be being unable to walk. Were you told this??? I was at 27 yrs of age and had a 4mm slip in 1 month....considered an error of Cat Scan only to be repeated and same outcome, so emergency radical fusion. Unlike you I was in agony, a sneeze would drop me to the floor coughing was interspersed with screaming. Log rolling in and out of bed....climbing up walls to get upright in morning......with 2 small kids. If you have a bone graft harvest site you can normally expect that to settle down after cpl of months. But leg burning may need second opinion. Bowels effected get to specialist ASAP.

  • Well. I had surgery 8 months ago. After surgery I felt burning pain in the sole of my left foot. I have had and still do bad burning pain in my feet. The surgey was a posterior laminectomy disectomy with interbody fusion and instrumentation at T12 L1. So I don't know what happened. I will see another specialist in Philadelphia later this month. I hope I can get some answers and relief. Yes it could of gotten worse that is my disc bulge but I had that for years. I'm 48. I guess it could of gotten bad to were I could not walk. I had started to get get weakness and the doctor[surgeon] recommended the decompression . I'm just trying to get though each day one at a time. I don't have a lot of back pain. My bowels are good. I take oxy so I have slow pee. I hope you are okay. Thanks for response. Oh. I may look into to spinal cord stimulator for help. If it doesn't get better in time.

  • It's possible to have scar surgery grow on/near the nerves in the surgical area and cause chronic never pain. I know you can't have an MRI with metal bits but some kind of scan with contrast will identify scar tissue if present. Ask your neurosurgeons.

  • Okay. I will. I'm sure there is scar tissue but remember my pain started right after the surgery so scar tissue could not form for that. Thanks

  • Flat out again only way to releave some pain. I was 45 when i started having problems with my back and like yourself i done everything the same. Even if someone wanted to pass me i would freeze in fear incase i was bumped. Its been 3 years since fusion and your right im still in pain with numbness and nerve damage to my legs. I find walking dont get any easier. Ive done pain clinic. Physio. Meds tens machine and anything i can think off and the only one thing i hadn't tried which was starting to accept it and enjoy what i can do rather than can't...

  • If I was you I would definitely ask for Neurologist appntment for reassessment........failing that you could ask yr GP/Pain Specialist about Gabapentin/Amatryptaline/Tegratol?? All helpful with Nerve damage and Neurological pain. Cat scan would be useful as I feel you know far too much about your condition, ergo u r smart and not likely to be fobbed off with time wasters....I think you will get to bottom of....and I hope you don't end up like me. 😄

  • Well. It's going to be a challenge. I don't know how you are or what you feel in terms of pain and what limitations you have. For me. My life has completely changed for the worse after the surgery. I hope I get better and find a solution. I am smart but was not smart ahead of my surgery. I was not prepared nor educated on all things spinal prior to my issue leading to surgery. I was in pain, had leg weakness and was in fear mode. So I trusted the surgeon and thought it was the best path. He made me feel confident and comfortable ahead of it as did others who knew him. I did not expect all this afterwards . Maybe he made a mistake or maybe this is just what happens or maybe I'm a slow healer. I just know my life is very different and I get sad and do feel regret and guilt at times for how and why I got here. I was so active healthy and strong prior to this. Every thing that happened came so quick. I should of been more prepared. Thanks.

  • Ps just needed to say .....our Surgeons in Weatern Australia have to have 75% chance of positive outcome before they can undertake elective spinal surgery....I spent 4 days having run up tests before transfer for planned 6hr 2 team surgery.....knowing that if one single test showed any nerve canal damage or degeneration obvious surgery would have been cancelled......even underwent the most horrendous test 'Discogramme " was hysterical as they couldn't get thru scar tissue my body had developed around site.....the gave up after 5 attempts and I went into very scary surgery after transport still sobbing .....I guess I'm saying if they make it sound too easy and yup we gonna just go in there and do this and do that......ask boatloads of questions and b prepared to refuse if your instinct tells you not to go ahead.....they get paid the Medicare Levy whether they see you again or not and often it's proactive...its your these three meds + 3 days flat on back should bring you back from a spasm Diazepam 5mg oral + Indocid 100 Rectal (bypasses yr organs and that's a good thing!!) Antiinflamatory and low Paracetamol Maximum dose +Codeine if required. Then you should be able to back off as you feel better.....that's my save the day regime for a Spasm and have a whole other regime for everyday......sorry I've bombarded you but it I feel for you......

  • You have been helpful. The more I read about back surgery especially spinal fusions with instrumentation the more I realize how risky and no proven these surgeries are. Yes I had a good size disc bulge at T12 L1 but I had that for years without issues until I had a stupid chiropractic treatment which I believe caused my leg weakness that I had days later. Once the surgeon did my mri and with my symptoms, he was recommending decompression surgery. I knew little and other doctors suggested some type of surgey would be necessary. But little did I know how serious this would be. The approach was through my back. Books I read say to come in through the side of the chest. So I don't know why my surgeon did this through my back. All the screws are in correctly but something must of irritated my cord as I had a burning foot right after the surgery. This could not be scar tissue so quickly after surgery. Of course I could be now dealing with effects of scar tissue. And they tell you very little about scar tissue prior to surgery. I feel quite taken and deceived by all this. I will file a complaint to the Florida Dept of health and I will pursue legal action. No lawyer will take my case so I will have to pay upfront to a lawyer to get justice. Maybe this surgeon did nothing wrong but I think he did. He rushed me into a surgery that was risky without explain the risks and providing alternatives. He tool an approach not ideal for the t12 spinal level.

    I will get justice. Now I am left to see another specialist who I hope will be competent honest helpful and detailed. So I can get answers to my chronic pain which is mainly in my feet. A burning pain. It's awful. But I manage to work my desk job but I can't do much else. I fight pain all day and night. It's a terrible thing. Why me? I have been through so much and I keep thinking back and how i could of avoided this nightmare. One decision could of changed it. There will be folks who say maybe the surgery was necessary as I could of been paralysis or bladder bowel incontinence. I don't know. I was fine for all my 48 years. Until those dreaded couple of days of strange feelings in my legs and weakness in my legs. Maybe with rest and ice and ibuprofen things could of settle down. I will really never know.

  • Dear Jerry,

    I know its been a year since your original post and I pray that things have either improved or at the least, not gotten any worse. I believe that you may have developed RSD/CRPS. This is a chronic pain disease that can occur after surgery or injury. They don't know why some people develop it or the exact cause, but it is characterized by its instant onset with severe burning pain (neuropathy). There can also be swelling of any affected limbs, skin color/temperature changes (either warm/hot or cold), sweating, and the list goes on. It is rarely recognized for what it is as it's fairly rare but you do fall into the usual age range of 40-60. I suffered terribly from 2012-2017 while it spread from left leg to right, then right arm. I had a St. Jude SCS implanted in my cervical spine and within 2 months experienced 70% reduction in pain! I wish I could have gone with the Nevro as I'm possibly going on a 3rd implant due to mechanical failures (1st: lead migration & battery failure; 2nd: 3 wires out of 8 inside the cable have stopped working. I will definitely ask for the Nevro if their stopgap doesn't work. I know...3 implants in less than a year?! Are you nuts?! Nope! The pain relief and subsequent quality of life is worth the surgeries & possible risks. Life on "fire" is not the way to live. My best wishes & prayers, Eileen

  • if I hadn't blown my disc and had such a huge slip I would never have had the fusion was emergency, but like you I look back on my past and know that, had my parents told me I was born with the Spondylolisthesis and if they'd only had me put in the body cast as advised when I was a baby, and not to speak of all the foolish things I did not knowing how at risk I was my whole life could have been a lot different....I have a break further up my spine which I have managed to maintain all these yrs by keeping the muscles around it strong and stretching excercised to keep the disc space as wide as pos.....need it injected bout once a year but just goes to dr says "tell you wat go strengthen yr muscles around breach and drag Vertabrae off disc......and if they did we probably wouldn't listen, But I do know a man I used to work with who I begged not to have scheduled surgery...gave him my copy of BE YOUR OWN BACK DOCTOR". He's fine now and stronger than he's ever been....I'm dealing with a particularly nasty Spasm at the moment.....after 5 days in hospital. Spammed in the shower/bath.....dropped me to the ground ....literally Felt like someone had torn my Metalwear off my spine......was stuck in bath tub for 2 hrs b4 I had courage to break through the pain and straighten up to get out. 😫😫😫 Dr Injected me with Valium. Indocid and My Oxy Contin and Amatryptaline for last cpl days and bed rest.......coming out the other side 2day....thank god.....anyway all the best and keep me updated as to how you go along. I'm genuinely interested. 😄😄

  • Hi. I like that we share our stories. I would like to keep you posted and hear more about you. How do we stay in touch? Email? Thru this site? Etc? Jerry

  • Me to! Keep in touch that is my email

  • My Facebook Sandra McDonnell : from Ashburton NZ : Live Geraldton Western Australia

  • Sorry for your struggles. 8 months out your body is still in healing process for about a year. I developed fibromyalgia and deep nerve pain in my legs. My surgery was 2012, 2014 had hardware removed because inflammation was so bad, still is. Tens unit drove me nuts, worse. Started pregabalin and it helped a lot with leg numbness even though dose was low now taking 800mg a day. Oxycodone never helped me, Norco 4x worked better. Maybe a change in the type of meds would help. Suing would be difficult. But really you are not far enough from your surgery date for a fusion.

  • Thanks. I appreciate your comments . I suppose I need to be patient and realize after a fusion surgery and one at my level of T12-L1, 8 months is not long enough for healing or knowing if nerve damage is permanent. I will be seeing a new neurosurgeon later in March. I would like to get better imaging of my spine post surgery. The previous post surgery MRIs were not the best due to the hardware (Rods and screws). Maybe a ct myelogram would be better. I don't like that it's invasive but it could show more. I think the surgery I had was too risky after reading about it afterwards. Also I should of selected a better surgeon at a university hospital. But that's in the past. I can't change that now. I only beat myself up about it. I don't know if I can get my hardware removed. I guess I would have to ask that during my appointment. Also the post op MRI shows that the disc bulge and osteophytes are still there behind my cord. The posterior approach used by my surgeon did not allow for him to remove it. He removed the central jelly disc and placed in a peek cage with bine graft but the osteophytes bone spurs and annulus bulge is still there. Yes the laminectomy means there is no bone on the back side of T12-L1 but the spinal cord looks still tight. One doctor described it as tight but not crazy tight. There is still a csf signal too. I had a surgery which did very little to decompress T12-L1 and ended up cashing me neuropathic pain. I'm not happy about it. Also I can't do the things I did prior to this. I was so active healthy and strong but now I rest alot and my energy is far less. I hope that improves in time. Does it? I know spinal fusions even if done correctly can take a long time to settle in. Is that true? Well. Thanks again for your insights . I will try to focus on the solution and not the problem. Cheers Jerry

  • Gabapentin with amitriptyline is helping my nerve pain better than gabapentin alone. Might help some.

  • I had a myelogram, it was really nothing except inconvenient, unless they did it wrong! possible, week before it had broke down. Keep doing research, try getting dr to change meds. I know how frustrating it is!!! I have been dragging my feet in regards to trying Neurontin and it did help. At least I have a few good hours in the morning! I just trust God for whatever!!!! I had to bug my surgeon until he sent me for every test. I'm older so I could retire with pension, but had been suffering for a good 6 years. Your muscles and joints have been messed with and it takes time for complete healing. Try being positive, do research. I read sometime it takes 12 months

  • Unfortunately, any spinal surgery carries a very high risk, and the kind of effects you have suffered are rather more common that most people realise. Did the surgeon explain the risks fully to you before they did the operation? 8 months isn't actually that long for recovery from spinal trauma - if you keep working on a good physio programme, then you could well see lots more improvement for at least a couple of years, so maybe it might be best not to jump into any more invasive treatment until you have seen how good things can get. From the sounds of it, even though you have been left with what feels like damage, they may well have stopped things like the canal stenosis problems from getting worse. Are you seeing a pain specialist? If you can find one who uses a variety of techniques (not just opiate pain meds) you may get better relief than you do now. Also, pain specialists are great at helping you regulate and combine your pain meds so you get the biggest benefit from the smallest amount of meds. A good pain specialist would also be able to advise you on things like the neuromodulation too.

    I found the forum really great for practical advise about spinal issues.

  • Thank you. I'm taking a few meds including lyrica and oxycodone. My pain has evolved quite a bit over the 8 months so I want to get a better idea of what's happening. Hopefully I can find relief and settlement of this.

  • Hi Jerry,

    Im so sorry to hear about your situation. It is so difficult to find oneself in this position but I really feel the guilt and worry you are experiencing about making the surgery decision is also driving you mad! Some people do really well with surgery and others experience disabling pain without surgery. Anyway, it would be good to see a neurosurgeon rather than another orthopod - I was told always have a neuro operate on your back as they are more skilled but currently I am seeing an ortho who has helped me with nerve burning 'injections'. The procedure is called rhizolysis and it may be something that could help you further down the road... someone explained to me that minor nerves sort of go 'looking' for the pain coming from broken discs and become a problem in themselves... all they do is signal pain so have no useful function...

    there will be other things that technology will provide in the future - try to keep hopeful but equally if you feel like crap then that's ok too! You can't have known the outcome of your surgery is what i'm saying so try not to beat yourself up about the decision you made. who knows - it might have been worse if you hadn't had the surgery.... best wishes ;)

  • Hi Jerry, I had the NEVRO SCS implanted 4 years ago for upper body neuropathic pain after a failed c5c6 discectomy and it's been a great success. I previously had a Boston Scientific SCS but couldn't tolerate the "tingling/buzzing" sensation - it was like more pain on top of my pain. 

    Had come off most of my meds but unfortunately I now have a protruding disc at L7/L8 and will be having micro discectomy and fusion shortly for that.  

  • Hi thanks for your input.   Does having the scs make your skin feel differently.  That is where it's inserted.  The leads wires and battery.  

    Do you think this will help me if my pain is in my feet, lower legs and calves?   

    Good luck. But is your issue t7 8?

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