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Mixed trial results

I recently had the sc s trial with a never hf-10. I have failed back surgery (thoracic) and failed neck surgery (cervical). So, they put a lead at both locations. 


The thoracic site was much worse from the first day. There is still a lot of stenosis, but I have tried 2 neurosurgeon and neither will perform more surgery. It was so bad I had to get my doctor to remove the leads after 5 days. Never wanted me to try more settings but I told them they were not the one in pain and to quit calling or I would block them.


the neck was better from the first day, so I am getting an sc s out in there on 12/27. 


this had really better work because my doc's practice is going to strict compliance with the CDC recommendations on 1/1/2019. This is scary for me because I have been more than 3x their morphine numbers with their ultra conservative conversion factors. We had begun switching from fentanyl to methadone already because the fentanyl was losing effectiveness in day 2 of the patch. It had never worked using the 3 day cycle and I had always changed after 48 hours. Because of the variable long half life of methadone it had helped a little bit now I will have to cut 50 mcg in 2 months at the 3 day change. The methadone and sc s will have their jobs cut out for them. 


as for whether the sc s works, my doctor has warned me the trial is a good indicator but not a guarantee. Two of her patients had to have the permanent unit removed. I am only doing it out of desperation. I was back to the point of praying to die.


good luck to each of you and would wish you a pain free Christmas. 

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Comments

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 377

    King, I feel your pain. I've been in the same situation accepting a SCS because I was so desperate and offering the same prayers every night. Fortunately, I found the right surgeon and pain management clinic that have helped me find and obtain a half-way decent quality of life. Don't give up! Keep looking for a surgeon with the right credentials and a PM clinic that has the compassion and the skill to help you. I don't see where you are located but maybe telling everyone where you live someone can offer a suggestion. Hang in there! There are many of us that have been in or are in the situation as you find yourself. We are here for you!!!

  • Agreed. All we can do is hang in until something good happens. Seems like that is high dose and would take a year to wean off. I've been struggling with lumbar spine and cervical troubles. My neck is not bad, a few degenerative discs and slight bulge. I hardly ever complain about my neck. My lumbar spine is a mess. I'm 36yrs old and 6'6" tall. In 2016 I started having back problems. 2 failed L5 s1 microdiscectomies and possibly a failed fusion surgery. I'll find out at my one year follow up in March if the bone bridged/fused. 3 months after my fusion last year there was no evidence of any bone bridging. My surgeon sent me to southeast pain care. I tried a few more bilateral transforminal epidural steroid injections that were not lasting. So, my last resort was Boston scientific SCS trial. I had the leads removed January 15th 2019. I was a 7 day trial. It was not a game changer for me. During the sca implant surgery they turned it on and I could feel the shock on the entire left side of my body. They moved it in farther and left it there for the trial. Yesterday and today have been terrible for me. The pain that is in both my lower legs is electrical, stinging, burning and it hurts the soles of my feet when I walk. I feel like I should go to the hospital to get an MRI. I've been on gabapentin and now lyrica, I also take valium, zanaflex and cymbalta. The pain doctor recently prescribed me 5/325 hydrocodone 1 pill a day as needed. I have never been on such a low dose like he prescribed but I felt ashamed to ask for more. So, I ran out early because I took like 2 per day. I'm just exhausted from my spine problems. I'm not workers comp or on disability. I work for my family and they pay me even though I haven't been able to work much. Im about to lose that income because we fight alot. THE STRUGGLE IS REAL! My wife and 2 young children need their dad back! I took care of everything that broke in the house because I grew up around the construction industry. We dont vacation hardly. I never thought that I would be 36 with such a diablitating health condition!.......but I still have hope something great will happen.....I forgot to mention that I have some type of scoliosis as well...chronic spine people need more treatment options! Insurance companies need to cover more treatments..like stem cell injections for DDD......ok, I'm done ; > ]...p.s....can anyone answer this question?...when I'm lying on the couch on my back, i arch my spine up and to the side and in makes a clunking sound in my lumbar area? It is like 3 distinct chunks in my vertebrae. Thanks for reading. 

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