First Post, ????2nd Anniversary????


 
Posted by Kjjdorsey (1 posts)
Dec 14, 2017 1:16 PM

Hi, I am new here and this is my first post. Two years ago today, I had my trial SCS implanted. I loved it so much, I begged for a few more days before they removed my leads. You see, I suffer from RDS or more commonly known as CRPS (Chronic Regional Pain Syndrome). February 2014, I slipped and fell in my home. Stuck my right arm out to break my fall and ended up tearing my ligaments and tendons in my right hand and wrist. My orthopedic surgeon said I would have been better off breaking my arm or wrist. I was on multiple pain and nerve meds on Norco, Gabapentin, Lidocaine and Butran patches, MS Contin, Percocet, Lyrica, Ketamine, Zanaflex, Bacloflen; prior to my fall the only medication I took was Lisinopril for HBP. I feel like that was ages ago. After my first tendon repair surgery, I went in for my post op and the doctor freaked out. He said he never saw a hand that big! I knew it was swollen but I thought it was normal. Obviously, I was now terrified. I started therapy and after a few months, my swelling went down some but then I started feeling the tingling, twisting, burning of RDS. Soon came the spasms and sensitivities to touch, heat and cold. I was in hell and it was only September! My orthopedic surgeon shoveled pain meds down my throat and kept me in therapy to 'get my swelling down'. I endured a second graft repair surgery and was referred to an elbow specialist the following February. Before he started his examination of my elbow, the condition of my hand was addressed. I was immediately referred to a pain management doctor (PMD) who diagnosed my CRPS. I was relieved when my PMD tried the Stellan Blocks (they worked a little at first but didn't last); I endured 4 of those and then I was told about the SCS. Desperate for any kind of relief, I researched and read everything I could about SCS and dreamt of pain free days/nights. After the mandatory psychiatric review and I was finally scheduled for the trial, I wanted the permanent implant scheduled immediately. I KNEW it would work. I prayed on it and I was out of options anyway, so why not? Of course, I had to wait for the trial but my dreams were reality. To be fair, it does not take away all the pain and misery from the suffering CRPS causes but it makes life bearable. My pain pre-SCS was hovering 8/9 and its now 4/5. Still high but I'll take it anyway. I am still on meds but not as many as before. I can't wait until I am opioid and nerve med free; I am on Percocet, MS Contin, Lyrica and Bacloflen. Yes, I still get spasms, numbness and tingling but I no longer have thoughts of cutting my arm off. I had a hiccup that did upset me and I am recuperating from as I write. My permanent implant was placed January 25, 2016. I was led to believe that my non-rechargeable battery should give me 4-5 years of service. Instead, the day after Halloween, my remote alerted me that I needed to contact my doctor immediately-it was 3 years too soon but my battery was at the end of its service. Let me stress, that programming during the trial period is very important. Make sure they take into account the possibility of continuous usage (it was clear in my records that I would be a 24/7 patient). Unfortunately, since mine was done over the holiday my rep was out of town, I had another rep for my post op and yet another rep when I had the permanent implant. The notes or whatever they do when they are locking in your programs, were nowhere to be found when they tried to verify the reason for my battery drainage. I still cannot recall the reason why I opted for non rechargeable battery, maybe it was the visual of the fanny pack but whatever it was, I regret that decision. Now, I am healing from my battery revision surgery and my rechargeable battery will be with me hopefully a lot longer than 1-1/2 years. Thank you for listening to my ramble. Who would of thought that a simple fall would end up being a life altering event? To all of my new friends who are chronic pain sufferers, I wish for pain to be eased and your days of suffering to be few.

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Posted by Quicksilvr44 (3 posts)
Feb 07, 2019 12:53 AM

Hi Kjjdorsey, Thanks for your input. I have been away from RAP, but am back as I am needing to get my battery replaced. I had my stimulator implanted in 2006 and here we are 13 years later and it needs to be replaced, although my controller hasn't alerted me to that yet. The rechargeable stims are great. I have heard stories of people needing to recharge every day and with me, it was maybe monthly. I was using very high power on the original implantation, then I ended up needing a revision due to no listening to MD instructions. Boy, I was lucky, the revision got the lead so close to the spinal cord my power usage is very minimal, probably the reason my battery has lasted so long. Best of luck to you.

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Mike Roman

Michael Roman will always be lovingly remembered for inspiring so many who suffer from chronic pain. He toured the country sharing about his battle against chronic pain — urging others to never give up. Through determination and a positive outlook, Michael lived his life to the fullest, while also giving hope and strength to countless people who faced seemingly insurmountable situations. Michael will be missed, but his positive influence lives on.

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