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What would you tell someone considering an SCS?

The title says it all!

Failed attempted treatments include numerous cortisone injections, PT, chiro, meds (including nerve meds, steroids, anti-inflammatory, and as needed pain meds), back brace, diagnostic nerve block, and two surgery consults. One surgeon recommended SCS but my long-time primary back doctor (who I'm beginning to lose faith in) doesn't like the idea. If I go forward with it, it'd be against his approval. My PT, whom I've also had for 15 years, said he thinks it's a good idea at this point. One downside of the SCS for me is prior to this most recent back flare up we've been going through infertility treatments so unless I could live with the implant off (which I couldn't at this point), we'd have to stop trying to get pregnant & expand our family in non traditional ways.


Long version of my story if you need more details:
29 year old female. I have degenerative discs & herniation at L3/4 & 4/5. I had a discectomy 14 years ago and they reherniated within a few years. For the most part, I have been able to manage pain with cortisone injections every 12-18 months but have been on a downward spiral since November. I had an epidural injection in Nov with minimal relief but it didn't last long. By Jan I called my doc and he ordered another injection so we did a facet cortisone injection in early Feb. I had about 8 hours of relief and it was back to misery. Two weeks later we did another injection but epidural style this time and it yielded about 4 hours of relief before I was in tears again. Primary spine doc repeated my MRI and sent it over to the surgeon who said it hasn't changed much at all since my 2015 MRI and while there's some herniation and a small amount of narrowing into nerve areas there's not enough where surgery would be worth the risks (because of my degeneration they are afraid of a domino effect of repeat surgeries if we go in and cut again). I actually totally got what the surgeon was saying when we looked at the MRI together. He recommended the SCS. I brought that info back to my spine doc who told me in 20 years of practice he's only recommended the SCS a handful of times because he'd like to fix the root cause versus the symptoms and he didn't feel I was working at this long enough (nov - early March by this point in my timeline). So we got a second surgical opinion and he felt somewhat similar to the first surgeon but said if we did a diagnostic nerve block and I felt a few hours of relief then he'd know right where the pain was coming from and he'd operate there. (In addition to the back pain and "normal" nerve pain in my left leg and foot, I've had a half dozen episodes of solid numbness from the waist down in both legs and they can't pinpoint why on the MRI.. hence why he wanted the diagnostic nerve block.)  Well the nerve block didn't work. My spine doc's nurse admitted he's confused by my case but when I asked if he had anyone he'd recommend for the weird cases like mine he said "he's not interested in referring you out.. he'd like to see you through to completion". I'm losing hope in him. Right now he's taking forever in between attempted treatments/calling me back with plans/etc. Yesterday his nurse finally got back to me with the next phase of attempted treatments and rattled off 4 things to do now but three of which the doc already implemented at my last visit so the only real change is adding in a brace. Only after I explained I was unhappy with the amount of time between attempted treatments and confused why we were going backwards aggressiveness wise did he add in a fourth injection next week (facet on each side of the spine). If the first three failed I wouldn't expect the fourth to randomly work but I can't try nothing! I reached out to the local big university hospital spine clinic to have the team there look at my files/MRI/the huge list of meds my doc put me on. Their surgeons will review my stuff within a week of receiving it. Id it's not clearly surgical, which I don't think they'd find it to be based on what my MRI looked like and what the first two surgeons said, they would refer me to the non surgeon specialists there but they are booking out into mid/late summer. I've already been marked as totally incapacitated by my spine doc for about a month now and I was barely functioning prior to that and having to use a lot of PTO at work on days I just couldn't function. Now on FMLA at work and I can't parwnt/care for my 2 year old and because my husband works third shift I have to have a live in nanny right now. I'm the breadwinner in our family and I'm running out of time left under FMLA/short term disability. So if the injections don't work next week and if the surgeons at the university hospital agree that it's not surgical in a traditional sense, in considering going back to surgeon #1 and proceeding with the SCS trial/implant even though it's not what my spine doc (of 15 years wants to do). 
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Comments

  • SavageSavage United StatesPosts: 7,385
    hello gboyce 518 !
    while you are waiting for responses from members with shared experiences, search may be helpful to you, upper right on page.
    for any of your concerns, you may be led to current or older discussions. you may be led to medical side.
    the main site has all the formal medical articles and videos for you to research on, also.

    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • jimandjrjimandjr Dallas TXPosts: 745
    Love my Nuvectra Algovita. 4.25 months post op. While not a cure, I'm able to be more active than before the SCS. I can leave my tiny little controlled environment and not pay the price for it later. I tried the trial version of the SCS and had to give it back after a few days. The walk to the parking lot let me know I missed it terribly. The few weeks waiting for the perm install were hell. My body got a taste of less pain and loved it. I can't give you advice. I can only share my own story. Hope this helps you. GLTU
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