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22 years old and having SCS issues

brownecbbrownec Posts: 6
edited 06/11/2012 - 8:58 AM in Spinal Cord Stimulation
Hi everyone! I am new to this forum. I've been reading it for awhile, but just got an account so I can post. A little background, I am a 22 year old student who got my St. Jude implant in August. (I was 21 at the time) I have chronic nerve pain in my arms and legs that was caused my chemotherapy I had when I was 14. Prior to my implant I was on all sorts of narcotics. I had a fetanyl patch, took dilaudid for breakthrough pain, and was on Cymbalta and Neurotin. It was a mess. My insurance company denied the implant saying it was "experimental" for over a year. Eventually part of my hand turned grey, landed me in the ER, and allowed my doctor some ammo in appealing to my insurance company. I have two leads so it was very expensive (over 100k) so I understand it was a lot for them to pay, but I am way too young to be all strung out on narcotics! I had some post surgery complications from my perm, 3 ER visits and one admission in 7 days, but it was worth it. I had GREAT pain coverage. I was able to get all regular opiates. I took maybe 2 breakthrough meds a month. A week ago I went to turn on my stimulator and had no coverage in my legs anymore. If I lay really flat I can feel the coverage, but it had moved to my hips and stomach. A rep from St. Jude was unable to reprogram it and I go for x-rays tomorrow. I am really discouraged because my battery is supposed to last for 10 years so I was figuring this would be a solution for at least 10 years. Instead, it's only been 10 weeks and I am already facing the possibility of another surgery. I am also a full time college student so I can't just take time off. I am a social work major and the way the program is set up, if I take a semester off I actually end up losing a whole year. Has anyone had similar experiences? What about the more invasive surgery for people whose leads migrate? How is it different? any other young SCS folks out there? Thanks!


  • Hi. Just like you I am new to this site but have a similar story to your own. I got my first SCS implanted about 11 months ago. It was great! However, within 2 weeks, the leads had moved around my rib cage (which was my own fault) and landed me in a corrective surgery about 6 months later. For those months between surgery, I was reminded of how difficult life can be as a then 19 year old with chronic pain. Just like you, I was a full time student but all this mess has made me miss my last 2 semesters. Tomorrow I hit my 5 month post surgery mark and could not be happier. While I still find the stimulation to be veeeeery positional and to cause muscular pain, I think the procedure(s) has been successful overall. I can understand how crappy it feels to be in your early twenties and in so much pain. I barely just hit 20 myself and have been dealing with chronic pain for 6 years. Since being disgnosed, it of course has just gone worse but I think I can almost see the light at the end of the tunnel.

    In regards to the surgery to fix your migrating leads: for me, it was exactly the same as your initial procedure. The only difference was slightly longer scars & the place,ent of a back-up lead. :)

    I hope this was a little helpful. I have never talked to anyone with a SCS so this is pretty cool for me!
  • I am not as young as you, I was about 39 when I had my SCS put in. However, it saved my life. I had 2 young kids and after 11 back operations, I was bedridden for over a year.

    I fell a year after my first implant and actually cracked a lead. They needed to replace the whole system. It wasn't fun, but still worth it. I also then had an intrathecal morphine pump implanted for added relief. 3 months later it got an obstruction in the catheter. That has also had issues with catheter leaks.

    But even with their problems I would not trade them for any money in the world. I count my blessings everyday that these technologies exist. I hope your issues get resolved quickly.
  • It's great to hear from some more people!! I had a revision on my stimulator to try to get the coverage back in my leg on the 12th of December, but it didn't work. They can't figure out why they couldnt get coverage below my knee, since I had perfect coverage for months before. I still have coverage in my arm. My choices are to have an extremely experinced neruosurgeon do another revision and try, or have the same neurosurgeon put in paddle leads. the neurosurgeon did tell me it would be "real" back surgery if i did the paddle lead option and my recovery would be slow, which is very hard since im a full time student and i cant take a semester off unless i want to get a year behind because of the way the social work program works. i missed soooo much school in high school and middle school when i was on chemo and steriods so it's too emotional for me to get behind again because of my health. i also feel too young to be on such heavy narcotics, but thats what ill have to do for at least the next several months while im waiting for my spring break to do the surgery...sigh...
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