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SCS in early 30's

Jo_vdhJJo_vdh Posts: 29
edited 06/17/2014 - 6:44 PM in Spinal Cord Stimulation
Hi All,

I'm looking for anyone who may have had a SCS implanted in their early 30's... I've been fighting chronic pain following FBSS for about 18 months, and after trying another round of injections and radio frequency, along with the daily medication of lyrica, cymbalta, norflex it looks like a SCS is the way forward for me.

We have got a trial booked (unfortunately not until the end of August) and I'm going to see how the system works for me before looking to go ahead with the permanent.

What I'm after is some information, feedback, thoughts on getting a SCS done given my age. I'm 31, had my back surgery at 28 and diagnosed with FBSS at 30. I have read some great stories of people gaining a lot of their life back after having SCS implanted, but not many stories from people under 50 - I'm just wondering if there is anyone out there who can relate to my situation and let me know their experience with it?

The other thing is we still want to have kids... We don't have any yet, and this is something we were wanting to do sooner rather than later - but given my pain at the moment it's not really a great idea (never mind that the medications say it's a no no)

I know there haven't been any trials of people running their SCS during pregnancy - and I'm not asking for your thoughts on if it can be done or not - I just want to know if you've gone through a pregnancy successfully with it and how you managed not running it for that period?

Just after some reassurance that I'm not making a silly move that will come back to haunt me down the track.

Thanks!
July 2009 - L1, L3, L5 disc hernation
Jan 2011 - L5/S1 Microdiscectomy
Dec 2012 - return of neural symptoms
June 2014 - fusion recommended - awaiting insurance approval
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Comments

  • Jo_vdh said:


    Just after some reassurance that I'm not making a silly move that will come back to haunt me down the track.

    Thanks!
    I am 43 and wish I did it earlier. Earlier in life, I just wanted to fix things or ignore it was a real problem. The SCS will be easier to recover from at your age. I just did mine in the end of May. i feel great so far! My kids are glad I did it too.
    Murraytscan@yahoo.com
    L4-L5 fused at birth (congenital malformity). L-5-S1 bulge/degeneration, L3-L4 bulge/degeneration. Permanent nerve damage L5-S1 and L3-L4. Fused C5-C7.
  • Hi there.
    I saw your question about getting the implant in your 30's and I've had mine for 4 years now, implanted when I was 32. I actually don't have back pain but thought I would still share with you my experiences. I have nerve damage around my ribcage area after a surgery in 2003. It is like many others- searing burning pain that never ceases.

    My mindset is that I don't feel it's right to complain unless I have tried everything possible to relieve the situation. After years of pain meds, prescriptions for nerve pain, therapies like accupuncture and biofeedback, and nerve blocks every 3-4 weeks I found the best daily treatment was with Lyrica (a Godsend!), methadone, dilauded and a TENS unit.

    With these treatments my pain was still intense so my doctor, the director of the pain clinic, talked with a neurosurgeon and decided to try the spinal nerve stimulator for this pain knowing that it may be very hard to reach these nerves with the SCS. The surgeon wasn't aware of using the SCS for this area of pain.

    I did the trial with the leads and it really didn't do much so we tried the more invasive paddle that is more stable than the leads, but part of the spine has to be chiseled off to slip the disk in.
    That offered immense relief! I have been able to get off the dilauded and reduce my daily methadone. I am super happy to have had it implanted!

    But....there have been some not too pleasant complications:

    1. When the neurosurgeon implanted the battery it stuck out at a funny angle from my hip and so had to have another surgery to relocate the battery.

    2. I use the SCS 24/7 and so get used to the stimualtion and it regularly had to be increased. After about 2 years the pain reworked itself around the stimulation and it lost a lot of its effectiveness. So the neurosurgeon suggested to take out the paddle and move it to a new location. The paddle is actually meant to be left in place indefinitely because of having to cut off some of the spinal column, but we tried it anyways. During the surgery the surgeon wakes you up and turns on the stimulation to see if it works. During this process we couldn't find a better placement of the paddle. When I was woken from the surgery I was told that the surgeon removed the entire unit and the battery.
    That had never been discussed and I was incredibly upset! (Major miscommunication along the lines somewhere....). So the next day the surgeon went back into my spinal column, had to cut away scar tissue, and chisel out a 3rd area on my spinal column to slip the paddle in.
    Of course the battery had to be implanted again as well.

    The pain was still helped a good deal, but not nearly as effective as in the beginning.

    3. And later For some reason the battery was incredibly difficult to charge and we determined that the battery was at an odd angle and was not connecting with the charger. So, yes, yet another surgery to relocate the battery.

    Uff! Even with all if this, it has still been worth it! Charging the battery can be frustrating. Sometimes I can feel it getting warm under my skin.
    I pretty much have nerve stimulation on my lower half of the body. This is the only way that we can reach the intercostal nerves. I get used to it and forget about it. Sometimes when I am bending over or putting on my socks my legs do little jerks from the stimulating sensation. Also, it is like I can "hear" when the spinal cord connects to my skull. Kind of a weird sensation and it feels "quiet" when I turn it off. I got used to this pretty quickly as well.

    I turn the machine off a few times a week so that I don't become as acclimated to it. I am nearing as high as the intensity can go and so am trying to prolong that as long as possible to maintain its effectiveness.

    My guess is that since I've had the surgery they've come out with new batteries and new chargers so the problems I've had may not be as likely anymore.

    I completely encourage anyone thinking about this to give it a try! It is especially great because you can do a trial- how many surgeries out there can we get a trial of first before committing to it?! And the leads vs. the paddle implant is so much less invasive.

    I really wish you well!
    If there are any questions you may have for me certainly let me know.

    Gretchen
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  • I wanted to do the trial as quickly as possible so went with someone not as experienced and it didn't go as well as it should have. I had a lot of temporary pain. I wasn't given some sort of medication to reduce the pain during the procedure and the doc also ran the lead into the "gutter" (that was the people from St. Jude said). Once the leads were in place though it didn't hurt anymore.
  • Gretel1006, Sorry to hear your trouble. I don't seem to have all the side effects you feel, but I am using leads and boston sci's SCS. Mine has allowed me to walk normal and I quit stooping over now, so I am literally walking taller and more appropriate with my age.

    I do get some rib stim, but I can adjust that away. I am using it with both legs and lumbar. I may have to stay on a lower dose (33% of original) of Lyrica, but I am completely off Hydrcodone and I am only taking ibuprofen as needed; and I get much better relief than I did with meds.
    Murraytscan@yahoo.com
    L4-L5 fused at birth (congenital malformity). L-5-S1 bulge/degeneration, L3-L4 bulge/degeneration. Permanent nerve damage L5-S1 and L3-L4. Fused C5-C7.
  • update. I am off Lyrica completely now and only on Ibuprofen. I turn mine lower at night, turn it up when I get up to help me move, and slowly turn it up as needed in the day. I hope to keep doing that to reduce growing too acclimated to it.
    Murraytscan@yahoo.com
    L4-L5 fused at birth (congenital malformity). L-5-S1 bulge/degeneration, L3-L4 bulge/degeneration. Permanent nerve damage L5-S1 and L3-L4. Fused C5-C7.
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  • Hi Everyone,
    I wanted to say thanks for sharing your experiences with SCS with me. It looks at this stage as though I'll be undergoing a fusion first as they have detected some instability in my spine - l5/s1 has herniated again and is impinging on the nerve root again. Given this has happened before they are concerned about the stability at that joint.

    Just waiting on approval for the fusion, and then'll we'll be able to go ahead... The SCS is still on the table as a possible path, but not until they have ensured my spine is stable.

    Will keep you updated on how things go.

    Jo
    July 2009 - L1, L3, L5 disc hernation
    Jan 2011 - L5/S1 Microdiscectomy
    Dec 2012 - return of neural symptoms
    June 2014 - fusion recommended - awaiting insurance approval
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