Hi Junebug it looks like its been a long time since anyone got on here. I just had a the simulator placed in my T8 zone ... Today marks the second week and one day since my surgery and both times that i have tried to turn my stimulator on it rails up the nerve pain in my lower extremeties even though when its on appears to help. I also have horrible burning and razor sharp pain at the bra strap area and the battery implant is driving me nuts to say the least... After I turn the stim off I get a sore top of my head I also had this in the trial...
I need this surgery to turn work I lost my job.. And. Have been at home for the past year almost trying to figure out what to do to have purpose in this world. How long after your surgery were you able to use the device?
Did you have the same success in trial as you do now?
When could you go back to work after the surgery?
I got laid off let me rephrase aftee 5 years of dealing a mess.
Good morning all,
I haven't posted on this thread in a while. So I had the surgery to place the implant in March of last year. I had severe increased pain that honestly never went away. I ended up having to take more meds after the implant than I had prior to surgery. I tried and believed and hoped for the best until Dec. I could not take it anymore. If I turned the unit on, within about 20 mins of turning it off I had what felt like a cattle prod being stuck into my back between my shoulder blade and spine. It ws either that or what felt like a jellyfish stinging across my shoulder blades or even a combination of the 2 at the same time.
I had it removed in Jan and have just found out that the stimulator caused nerve damage that I hope will improve soon. They did their best at finding the "right" placement but because of the twist in my cord they couldn't tell where the normal anatomical rear part of my cord was. It was quite obviously not where the paddle was placed. I am still in a lot of pain and waiting to see what the neuro and pain drs think would be help. I have heard that it can take a while to get the relief. It may be something that would get better with a reprogramming for you. I had about a dozen of them during that time and it never got better. I know several people whose quality of life are vastly improved but it was not my experience.
I hope you start feeling better very soon. Take care.
Hi Anna, I’m new on this forum but wanted to say hello and tell you I too am having some trouble/pain from the placement of the paddles as well as the generator. I had my surgery on Dec. 11, 2018 and STILL have a large scabbed area on the generator site that has not healed. I feel like it was placed way too high, waist level and definitely interferes with my pants! The upper scar has healed nicely but my bra irritates that area enough that I cannot wear it for more than an hour or so! I’m hoping this is temporary?! The unit does seem to be helping me with pain but I NEVER shut it off? I’m very curious why you would shut your off? Have you been instructed to do so or is it bothering you in some way? Please stay in touch with me. I don’t know many people who’ve had this done and it helps to share experiences and ideas! Thanks Anna and I look forward to your response. ~Tamara
Hi brianstamara, I am getting the Nevro hf10 with paddle lead on Wednesday, February 14. What was your surgical pain like? That is my biggest concern right now, second to the fact that I had one percutaneous lead for trial (they couldn’t put in two) and 2) will the paddle be as good? My trial was amazing. When did “life” return to normal after surgery? I appreciate any input.
Hi Kathleen,
Congratulations for making this decision and being pro-active about your pain/life. I am still healing, it’s been eight weeks now, with the top incision healed nicely and the bottom one still scabbed. But I believe this is due to a botched job with the staples on the bottom near the unit. I have had great relief and am no longer needing my Dilaudid XR. The surgical pain was uncomfortable but bearable. It was the adjustment to sitting with the two wounds that was the biggest challenge. I found that a combination of laying on my sides and sitting only for short durations in a very supportive chair was the best combo for me. They say 6-8 weeks recovery time and I would highly recommend giving yourself at least that long to make sure you heal well. I did not vary from the instructions much, particularly with regard to housework, as it is super important not to undo any healing you have accomplished. I could feel the deep, dull ache if I tried to do something that was just too much for the time. Listen to your body and rest a lot! Time for some good books and laying very low. If you can do this I think you will be amazed at the relief you get. The surgical pain is tolerable with moderate pain meds for the first couple of weeks. Good luck to you and let me hear how you are doing please?
~ Tamara
Thanks for your prompt response. Sounds like you are doing pretty well at 8 weeks. That’s very encouraging! I will post again after surgery to let you know how it goes.
Kathy
If you are leaking from the incision site get in right away!! Possible staph infection! My pain increased and was a staph infection. Don't take any chances with your health and don't worry about feeling foolish just take care of yourself.
Good luck Kathleen and I’ll be looking forward to hearing how you are doing! Sending positive healing thoughts!
Hi Anna wow after reading your experience I’m having second thoughts about getting mine done..do you regret getting yours or are you in a more comfortable place? ..only people with excruciating back pain can understand the lengths we go through to be if not pain free able to function better..your not being a baby..I understand where your coming from..it’s frustrating when doctors don’t want to admit that their procedures aren’t always a walk in the park if it was happing to them they’d be more understanding and not blow a person who’s suffering off..I hope your feeling better..
I had to stimulator put in November and it worked great but the area where the battery is never would completely close. Four weeks ago they determined I had MRSA in the battery and decided to take out everything. While in surgery they couldn't take out paddle because of scar tissue. The paddle tested for MRSA too. Was sent home with I. V. Now I have extreme agonizing pain on the middle of my back that feels like something stabbing and twisting. I don't know what is going to happen I'm just disappointed and pained
I hope they figure something out. That’s horrible. I’m sorry your going through this. I had mine placed 3/19
I'm replying to this because I see that you are a retired pain management Dr. I had a Bioelectron (now Boston Scientific) stimulator placed 10 years ago and never had a problem. Last year my pain management Dr. suggested that I get the new and improved unit and have a new 16 point contact lead placed. So of course I said sure that would be great, WHAT A MISTAKE!!!! I have had nothing but but problems which started in the OR. They attempted to place the 16 point lead, all of a sudden I had such severe pain in my foot and toes, it felt like someone was ripping my toes and foot off with a vice, of course I started screaming, nobody knew what to do. Never turned the unit on, took out the lead, pain worse, took 3 people to get me in my car. When I went for post OP appt, my dr said he knew I was in trouble when he saw me in recovery room praying and sobbing uncontrollably, because the pain meds ordered did nothing at all. Very disappointed that he left the hospital before I did, especially when I found out he knew I was in trouble, he's been my dr for 14 years and I knew him professionally for years before that, I was a medical asst for a spinal surgeon for 12 years and we referred patients there. Anyway, I would up with full blown CRPS from the surgery. Because my insurance (Workers Comp) wouldn't approve epidurals or sympathetic nerve block I went like this for six weeks with the CRPS spreading to my other foot. Finally, he did the blocks without approval, taking four injections to finally get some relief. A few weeks after that I wound up in a coma with liver functions and ammonia level higher than any of my drs had ever seen. Neither my primary dr or pain mgmt dr thought I was going to make it. Was discharged six days later, home 5 days back to hospital coma again. This time liver functions normal, ammonia a little high at 52, but not bad. Nobody still knows why this happened, diagnosed with hepatic encephalopathy, although no history of cirrhosis (I don't drink at all), no hepatitis, had tests for all. Now the stimulator, I tried to use it again and I used old charger. The charger worked for about 2 weeks, then malfunctioned, they said use new charger, did that, worked one time, then malfunctioned the same way the first one did. But in turning it on, it caused so much pain in my back behind my liver, it took my breath away, so had reprogrammed today and they are sending me new charger tomorrow. If it malfunctions a third battery, I'm having it taken out. I honestly believe that I have a bad unit implanted. I would love your opinion if you think health problems could be due to a bad implant. My dr wants me to go to neurosurgeon to have paddle leads placed, but I'm scared to death that the same thing might happen, or worse! I know this is lengthy, but again I would love your opinion. Thank you.
I'm so sorry your having problems. I'm new to this website. I'm just 4 weeks in so my heart hurts for you. I pray things will get better.
I don’t know why I didn’t get a notification that you posted. So I’m very sorry for such a late reply.
Things have gotten so much within the past month especially.
I was offered an intrathecal pain pump or commonly referred to as the morphine pump. It was implanted in May 16. Just like the previous saga, things didn’t come easy. It took the dr twice as long as normal and he ended up having to do a total and partial laminectomy of L2 and L3. When he was trying to thread the catheter up my spinal cord it kept turning around and going downward. So the only way that he was able to get it where it needed to be was to remove some bone. I was in agony all day and night after surgery. I cried the whole time. They were only giving me 1/4 of the meds that I was prescribed for post op pain. So once I got home it got a bit better for the back pain. I had a super bad headache that lasted almost 3 weeks. I also had a bubble develop at the top of the incision. After 33 days with a cerebrospinal fluid leak they took me to surgery to repair it. There was so much fluid that it had traveled the path of the pump tubing all the way around and filled the pump pouch enough that it was floating. Lol, leave it to me. They put meds in the pump 2 weeks after surgery and it’s been improving ever since. I actually had days where I didn’t feel the CRPS pain that has been there for well over a year. I’m reducing oral meds and had been doing it voluntarily even. So that should tell y’all how much it had improved. I told my dr that I was anxious to get off of one of them and we decided to reduce my dose and up the pump.... that hasn’t worked as well. So I’m going back for an adjustment in the am. Really hoping it returns to where it has been. Before this, I lived for years at and above an 8 with no reprieve. It’s gone back to that at points since we reduced meds. But I don’t want to go backward so I’m waiting for the pump to catch up. I’ll wait and reduce myself when I can next time though.
I got a taste of what things can be like and I don’t want to lose it. I’m trying to stay hopeful.
I most certainly suggest you go to the ER. I mean no one like to visit them, but they are there for a reason. If not there go to one of those clinics that see you for a reduced fee. Some of the one's affiliated with hospitals are pretty advanced and have imaging capabilities onsite. I am three weeks post-op and my frustration comes from pain at the incision site as well as chills and a low grade fever. I went to my doc and he prescribed an antibiotic and extra strength Tylenol. What's up with doctors prescribing you extra strength tylenol? I really need something a but stronger Sir. I passed by a CVS and a Walmart before I arrived at your office. Both stores sell Tylenol for much cheaper than that pharmaceutical company. I am so completely tired of being in pain. I was told that I should be at the "discomfort " stage. Well guess what, feels like full blown pain to me! Can anyone shed light as to how I can get some relief. My staples are due to be removed tomorrow. Wait, I think one just popped out as I sneezed. I'm sorry folks but humor is imparative for my daily existence. I've done the dance with depression before and I have two left feet. I prefer to smile my troubles away. Thanks for listening and prayers to you all.
WOULD YOU AGREE TO RECEIVE THE SPINAL CORD STIMULATOR AGAIN? I HAVE SEVERE SPINAL STENOSIS AND BASICALLY THE PHYSICIAN WHO HAS BEEN DOING SPINAL INJECTIONS AND KEEPING ME GOING HAD A NURSE PRACTITIONER SEND ME TO THE PEOPLE WHO DO SPINAL CORD STIMULATION.****
I HAD A FAILED SPINAL FUSION 54 YEARS AGO, AM 83, AND HAVE BEEN IN PAIN EVERY DAY SINCE THE SURGERY. i HAVE MANY QUESTIONS. HOW ARE YOU MANAGING, ARE YOU IN PAIN, ARE YOU ABLE TO WORK, DRIVE, AND TAKE CARE OF YOURSELF????
i have both a lumbar and cervical SCS and they have helped a ton I would do it again It has increased my ability to work and yes i can drive
Thank you for answering, how long did it take to recover after the spinal cord stimulator was inserted?
Did you require help from a friend or family member after it was done?
Mary,
Never in a million years would I agree to have another spinal cord stimulator placed. Stenosis is an entirely different deal than my funky spinal cord though. You might get relief. I have a friend who has a BS paddle and that is the only reason she can even move around. She has developed CRPS in her lower leg and foot from a back injury. She can't imagine having to live without it.
So if I were you, I'd see how a trial goes.
I was able to have the unit removed in Jan of 2018. I also had a Medtronics Intrathecal pain pump implanted (Baclofen pump). The pump has changed my life! I don't wake up in pain every hour, having to turn my heating pads back on or change positions. I am able to walk more and hold my nieces and nephews. If it weren't for my stupid knee and shoulder I'd be on cloud 9!
I really can't say enough about my doctor and the neurosurgoen who placed it. My PM saw me for the human I am, not a junkie needing pills to feed an addiction that so many would have. I was able to have an open and frank discussion with my doctors and they sought to get answers. They believed me! In all of my 34 years, no Dr has ever done as much to validate me. He's the only reason that I am able/willing to seek treatment for anything else.
I realize that the majority of people have complete jerks for PM Drs. I would love to give so any of the a piece of my mind.
When I started this journey a couple years ago... I was on 200mg of Methadone a day. I was getting the meds from a methadone clinic (yes I know they can not treat pain) Some of us just have to go to extraordinary lengths to get relief. Well I am proud to say that because of his understanding, patience and perseverance, that I am off of the methadone entirely! I was able to show him that pain drove me to the clinic, not addiction. It took time to find a good regimen and get doses adjusted but I am here. I'm still standing by God's grace.
If you only knew what the past 14 months have been like....... It's really hard to believe, even for myself. So I'll just say Don't ever give up! Fight to make them see the truth and what your needs are. Some of them just have to put things off to prove to "authorities" that our pain is real and its not going away on its own or with the "conservative measures".
Sending all of my fellow chronic pain people my undying love.