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@@NavyWife thanks so much! ❤️

@@carolesalrin2861 thanks so much! ❤️ Trying my best!

@@NEERAJKUMAR-rr3if trying my best not to let this break me

@@singersa It’s truly a living nightmare 😕

I have full-body CRPS among several other debilitating conditions. A string of bad CRPS flares burnt my left leg off my body 2 1/2 years ago, and bad flares cause 2nd degree burns throughout my back and chest. I cant even sit up without my Spinal Cord Stimulator and rely on pain meds around the clock. Every doctor says I’m the most extreme case of CRPS they’ve ever seen…at “title” I’d give anything not to have

@@ezraappel600 thank you so much ❤️ Trying my best!

I know you are. ❤❤❤

@@NavyWife thanks so much! ❤️

@@starrriaa it’s because I required a neuropsych evaluation since I had a traumatic brain injury 2010. Most evils only take 30 minutes tho

@@vinm2648 I’ve unfortunately needed multiple medically necessary surgeries over the years despite my CRPS, some have triggered flares while others haven’t, but they can’t spread it because I already have full-body CRPS. This surgery is a must because I’ve not only lost bladder sensation from the extreme pelvic and abdominal pain but am flaring more often and experiencing extra complications with my Graves’ Disease due to the extra strain on my body. Prolonged stress could lead to a fatal thyroid storm, so this could easily become a life or death situation. If surgery wasn’t absolutely necessary, I wouldn’t have it…Heck, I fought so hard to avoid amputation when my CRPS became destructive that I was on the verge of sepsis due to the antibiotic-resistant osteomyelitis and necrosis that resulted.

@@Haydenlewis7 I had already been in a wheelchair for years before losing my leg so don’t experience heaviness thanks to the stump rest that keeps my residual limb propped up.

@@NavyWife she is such a smart, good girl, and I’m so proud of her. Thanks so much for the prayers because we definitely need them now more than ever ❤️🙏🏻❤️

@@RebeccaPeacock-lq8dw I’m so sorry to hear about your daughter 💔 I’ve not only lost bladder sensation from the extreme pelvic and abdominal pain but my full-body CRPS is flaring more often, and I’m experiencing complications with my Graves’ Disease due to the extra strain on my body. This surgeon said he may not operate until next year, and I fear that the prolonged extra stress on my body could trigger a fatal thyroid storm. I didn’t realize it until now, but endometriosis has impacted my life for the last 20 years but is only now being given attention. Like so many women, I was told that passing out from ovulation and period pain was totally normal for so long that it hasn’t been taken seriously until it began to impact every aspect of my health this year 😕 Thank you so much for the prayers ❤️🙏🏻

@@NEERAJKUMAR-rr3if horrible. Now battling horrific endometriosis and waiting on excision surgery with a hysterectomy 😕

@@sunny4lady I’m so tired of my body constantly giving out on me 😭 As soon as I think I can begin moving forward, something new gets in the way 🤕

@@thewilltowalk6651 its so unfair 😥 you need a break ❤️❤️❤️

Same here fight with crps last 14 months

@@NEERAJKUMAR-rr3if sorry you deal with this 😥💔

@@sunny4lady we fight and we win this battle

@@MariaRamirez-ru3us I’m sorry to hear that you are battling CRPS as well 💔 My stimulator journey has been one of peaks and valleys since having full-body CRPS means that even a successful stimulator experience for me looks like a failure for others. When I had the trial for my Boston Scientific SCS, I was able to sit up in my wheelchair and take short car rides without being in tears for the first time in months. Having a successful trial made the wait for my permanent difficult because it’s common to have an overall increase in pain when the relief is taken away, but I’m so glad that I took the time to seek out an experienced neurosurgeon in the area for my permanent because that not only gave me the opportunity to have a paddle placed (pain doctors are only qualified to place leads), but I knew I was in safe hands if any complications arises during surgery. I was under twilight for both of my stimulator trials and don’t remember a thing, which was super important because I have horrible medical PTSD. The trials brought about some post-op pain of their own, but taking the steps outlined in my “Spinal Cord Stimulator Basics” series was very helpful. We decided to have a second stimulator added to hopefully reach the foot/leg where my CRPS started since the SCS signals were being blocked by scar tissue from a Laminectomy/discectomy 12 years prior. I decided to go with Abbott’s DRG because it’s meant to specifically target lower body pain. And while the trial did provide some relief, the permanent unfortunately did not. I don’t regret having it put in because it was worth a try, but I needed it removed in April when the battery began burning me internally. This wasn’t much of a loss since the device had been shut off for over a year at that point since I lost the foot/leg it was meant to target in 2022 due to a series of destructive CRPS flares that led to to antibiotic-resistant osteomyelitis and necrosis. So even with my one successful stimulator and pain meds, I still have very limited mobility and energy due to the intense chronic pain that remains. Life is truly taken minute-by-minute right now with the intense pain of endometriosis added to the mix, but I’m hoping things will improve if I can get it removed and get back to the level of pain that I was still functional at. Wishing you all the best! ❤️❤️

@@beverlypearson5332 thank you so much ❤️🙏🏻❤️ I’m so tired of my body constantly giving out on me 😕

@@sweetsunshineplaytime so happy to hear about your successful trial! It’s a catch-22 because it’s awesome that the trial provided much-needed relief, but it’s frustrating to have to wait for the permanent implant to get it back. Don’t be worried or surprised if your pain spikes a bit during this time because your body is gonna have to adjust to life without the relief provided by the trial; I call this “rebound pain.” I hope time flies and your permanent implant date is here before you know it! ❤️🙏🏻

@@waterhead1359 thank you so much ❤️ I’m so tired of my body constantly giving out on me 😕

@@NavyWife thank you so much ❤️🙏🏻❤️ I’m so tired of my body constantly giving out on me 😕

@@michellesmith9365 thank you so much ❤️ I’m so tired of my body constantly giving out on me 😕

@@BradLessy I did but decided to have Abbott’s DRG stimulator added instead. My Boston Scientific WaveWriter with a 32 contact paddle helps with much of my back pain and right leg pain but not my left leg due to signals being blocked by scar tissue from a L5S1 Laminectomy/Discectomy in 2012. Since DRGs are meant specifically for lower body pain and I’m allergic to adhesive, I chose to not have a device with an external setup like the one that Nalu requires.

@@thewilltowalk6651 were your sprint leads really fragile when it came to changing bandages? I have spoken to some where the leads have migrated at the slightest tug.

@@BradLessy the leads are spiked with the goal of preventing migration, but this has majorly backfired by causing them to easily break off inside of the body. I’d avoid the Sprint at all costs if I were you

@@thewilltowalk6651 sprint uses like a little hook end on their leads. Other brands use the tines.

@@thewilltowalk6651 ya the sprint lead is just the little hook thing at the end. I spoke with a Nalu rep and they said their tines are made of silicone. So it’s less of a big deal regarding mri compatibility as opposed to a metal fragment.

@@fuyingbro my best buddy for sure 🐾❤️🐾

@@fuyingbro happy to help any way I can. I haven’t been online a lot due to new health issues but am trying to get better about checking for comments 👍🏻

@@BradLessy I had it put in before insurance companies caught on to how ineffective it was and stopped covering it. If you are looking for a peripheral nerve stimulator, I wouldn’t give this company a thought and switch to trying to get the Nalu one approved. The SPRINT sadly made life worse for many people including myself. Wishing you all the best! ❤️❤️

@@thewilltowalk6651 I was also looking into the nalu system as well. I guess the main difference is the sprint is a 60 day system vs Nalu with the trial and then permanent implant. Curious to know what you mean by other people having a hard time with it? I haven’t found much information regarding either of these systems since they are rather new.

@@BradLessy the device has provided minimal relief for a short period of time (at best) for anyone I’ve spoken with, and we all had a section of the non MRI-compatible leads break off inside of our body during removal because the strip of leads is spiked. Sprint only recently made the leads MRI-compatible, but that still doesn’t address the flaw in their leads. Plus, it’s never ideal to have a foreign object left in your body for no reason. I spoke with the head of the company after my horrible experience because the only info I had access to was put out by the company, and he just fed me lip service. I take huge issue with a company that promises patients so much and only reveals the truth once they’ve gotten their money. I was furious to go from being told I’d experience “long-term relief” prior to the Sprint being placed to having my rep admit shortly after that “success” for the majority of the patients she worked meant a decrease in pain for a few months to a year 😕

@@Offishal_Lifestyle awww thanks so much!! We love you both as well 🐾❤️🐾🐕‍🦺

@@juana1483 yup 😕 So incredibly sad what that StimWave did what it did to so many. It’s so difficult to know who to trust in the medical field anymore. I’ve debated taking this video down but don’t have the energy to make a re-do without StimWave included right now.

@@kenwillis8487 Losing my leg was so incredibly hard and made worse by it being an emergency with zero concern for the aftermath. You have been through so much, and I’m so sorry that things have reached the point of life or limb. I was refusing amputation because I didn’t want it to worsen the CRPS throughout the rest of my body and ended up with a crappy amputation in addition to relentless phantom pain since Reinnervation was the last thing on their mind. It sounds like you have a great medical team that will give you the best shot at a good outcome with proper planning. Since Targetted Muscle Reinnervation wasn’t done at the time of amputation, I sought out a plastic surgeon to help 6 months after first losing my leg. I was hoping to be like the many who had great success with TMR, but it sadly didn’t help (I think my body is hard-wired for torture tho 🤦‍♀️🤦‍♀️). I needed a second amputation 6 months after that because my tibia nearly burst through my residual limb, and I will always wonder if that surgery is what rendered TMR ineffective. I apologize for taking so long to reply. I’ve been battling horrific pain from Endometriosis and searching high and low for a doctor willing to take my case. Sadly, no one wants me as a patient because they are worried about what post-op pain might look like since my CRPS is so extreme 🤕

@@jenlawson4291 I’m so proud of her! 🐾❤️🫂🐕‍🦺

@@docgregg2 happy to help as much as I can! I’ve been slacking when it comes to responding to comments due to a horrible Endometriosis flare-up, so I apologize for the delay. While I don’t regret getting either stimulator, they’ve had very different outcomes. My SCS continues to work well and allow me to at least sit up in my wheelchair and be a little active when used in conjunction with my pain meds. I ended up needing my second stimulator to be removed a couple months back when the battery began burning me internally, but that wasn’t really a loss because the permanent didn’t provide relief despite the trial doing so. Mind you, I have a whole lot of health issues in the mix, so even having one device work has been a huge win for me. With all else failing, it sounds like giving the SCS a try may be your ticket to life with less pain. Wishing you all the best! 🧡🧡

@@waterhead1359 I’m sorry to hear that you’ve been through so much with your device. While my original SCS continues to work without any issue, I actually needed my second stimulator to be removed a couple months back when the battery began burning me internally. That wasn’t much of a loss, though, as it was meant to cover the pain in my foot/leg that I lost to a series of destructive CRPS flares in 2022. I’m slowly catching up on responding to comments, as I’ve been struggling with a bad flare up of my endometriosis and searching everywhere for help. Wishing you all the best with the upcoming surgery! ❤️🙏🏻

@@jodiangle9097 I hope all went well with getting your device 🙏🏻 I’ve been struggling with some horrible endometriosis flare-ups so am behind on responding to comments.

@@SandyPeterson-o3n so glad to hear! Wishing you all the best ❤️

@@Min-Pins I’m incredibly sorry for the delay in response. I’m usually on top of comments but have been dealing with a horrible endometriosis flare-up that’s made it difficult for me to focus…or really function 🤦‍♀️ Sadly, a second opinion regarding the outcome of my TMR surgery confirmed that it was a total failure but would not recommend a repeat for fear of setting off another CRPS flare that would take more of my leg. I was receiving some meaningful relief a couple months out, but that all went away when they ended up needing to amputate a second time just 6 months after me having TMR (1 year post-amp). I’ve heard of so many great outcomes so wouldn’t focus too much on mine. Phantom pain is so debilitating, and I’d take the opportunity to try reducing it again in a heartbeat. Wishing you all the best! ❤️

@@kathyphillips9136 This video was from May of 2023. While I did make a full recovery, life has been incredibly difficult trying to battle the Graves’ Disease that they found accidentally on top of all my other medical conditions. I’m way behind on responding to comments due to a horrible endometriosis flare-up that’s been going strong for 2 months, so I apologize for my delayed reply. Wishing you all the best!