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Life Plans and the SCS option...

Lala329LLala329 Posts: 283
edited 06/11/2012 - 8:43 AM in Spinal Cord Stimulation
Hi spineys,

I'm in need of advice as far as timing on the SCS decision in relation to life plans.

Brief History: I have tarlov cysts that cause my low back pain. They are inoperable because the risk of nerve damage with surgery is incredibly high, so my doctors and I have decided that my only remaining options for management are meds or a SCS as all other conservative management techinques have been exhausted. I have very localized pain, so my doctor believes I will probably get good results with a SCS since they shouldn't have trouble covering the area. It is not the typical neuropathic pain which makes me a little worried about whether it will work, but of course a trial is the only way to know for sure.

I'm very much in favor of the SCS over meds, but I'm torn over how to fit these pieces together with where I am in life...

I'm 23 years old, and I'm starting school again this August after a year off for my surgery. I just can't decide whether I should go forward with the SCS stuff now, or wait and make the school transition and then pursue the SCS option. School is going to be a major transition, and I guess it just feels like I'm piling a lot on myself to throw the SCS into the mix right as I'm starting.

It'd be nice to go ahead and do the trial now so I'll know if it's an option, and then to go ahead and have the permanent one in place before starting school so I wouldn't have to worry about it while in school, and it will likely make school easier with my pain levels better under control.

At the same time, I'll probably still be in the scarring in period when I start which won't be great because it'll be a time crunch to get everything done before August. I also know revisions and other problems tend to come up, and that will be a lot to deal with on top of the school transition.

So, I guess the options are 1) Do the trial now, and if it works go forward with the permanent one before school, or 2) Start school and then maybe do the trial while in school and have the permanent one done at the end of the semester in December. I want the school transition to be as easy as it possibly can be, and I don't know if already having the SCS will make it easier, or if I should first make the transition and then deal with the SCS. And yes, I know I'm jumping the gun assuming it will work and I'll end up with a permanent one, but in order to know when to schedule the trial I need to have a plan for when I would do the permanent one.

I'd appreciate any insight or advice from those of you who have made the transition to life with a SCS...


  • I would go with option 1. As most of us scar in, the stimulation changes and you'll probably need a programming session to take care of things. Or, you could be like me where the stimulation pattern hasn't changed a bit since my surgery in November 2009. My last programming session was in late February and I don't see any reason why I would need another session any time soon. Every one is different. I hope your trial goes well and you can get some much needed relief.

    Why put off 'til tomorrow what you can do today?

  • I would think if this is the situation you are facing, that it would be a no-brainer. (not trying to tick you off here) In other words, if your pain is so bad that you are considering an SCS, then in essence there wouldn't be any way to manage school in that much pain. If you can manage your pain enough without the use of an SCS to start school, then why go with an SCS. Seems like some simple logic applied here would help in the decision process.

    It is not a given that every person who has an SCS implanted will go through a revision. Don't know how or where that came up. Yes, some of us do have them, but it is not something that is the norm

    If I could live my life without the use of an SCS, I would in a heart beat.

    Good luck with your decision.

  • I appreciate the feedback and opinions, and hope a few more people will share as well.

    I did want to follow-up to C's comment, though. I appreciate the candor and honesty, so please never worry about offending me. I definitely thought of that when making the post. I am at a point where my pain levels prevent me from functioning except at a minimal level, so it's not really a question of if I need the SCS, it's just a matter of when will it be easiest to try it and make the transition. I am able to care for myself and do the basic ADLs, but with the cysts being affected by CSF pressure I have trouble staying upright for extended periods of time, and I have an *extremely* low sitting tolerance.

    I guess in my heart I know I need to go ahead and take this next step because I need more help getting the pain under control and getting more functional, but the last thing I want to do is make any of this harder than it already is which is why I want to get the timing right...I think I see this as a quality of life question- Yes, I know I can find a way to get through my first semester without the SCS- I'm determined, and I've made it this far without it and did all sorts of crazy things to get through the last few years of school, but the quality of life is low, and if the SCS is an option that could give me some of that quality back then it is something I have to look into if that makes sense.
  • I was wondering if you have tried different oral medications and if your doctors have prescribed a high enough dose? Like others have said in the past here, SCS and pain pump are considered last resort options. I'm sorry that you are in this predicament so early in your life. I can see why the SCS would be convenient if you are planning to finish up school b/c you won't have side effects such as drowsiness. But do you feel ready to have this invasive surgery? Have you had a second opinion? Is there any way to operate on the Tarlov cysts? I'm not familiar with this so I apologize. I know that you will make the right decision for yourself and I hope that it brings your relief. Take care
  • Ok my two cents...no one shoot me. Lala this isn't or wasn't a transition for me. It was a way to deal and cope with everyday life. I would think you would want the trial now...and if it works then decided if you feel it will help you. No one here can make those decisions for you. I went into my trial believeing it wasn't going to help that much...I was wrong...and when they removed the trial I begged them to just leave it in until the perm. could be scheduled. They couldn't do that and I had to wait 2 weeks...the longest two week...because I knew how good I felt and here I was back in so much pain I could hardly function. Be positive and look at this as a way to help you deal with your pain not something you have to get use to. That is why I say there is no transition. With me there wasn't a transition into pain...Lord knows I would have stopped that...it was just there...and I had to deal with it. Pain isn't something to transistion into it is there and you deal...doesn't make life harder...just makes it harder to deal with things in that life. Sorry to go on and on...but I think you are looking at this as something you have to get use to...it isn't...it's just like a new med...you take it and deal with how you feel because of it...if you get better good if not you go back to the doctor for a different med. Don't work yourself up into this cycle of what if's...if you can handle school then do it...if SCS covers your pain than do it. Hope that helps.

    Sorry if I offended anyone...that wasn't the intent.
  • I don't have the SCS but having gone to College it can be demanding and you may be better able to concentrate on your studies not being in pain and hopefully not needing any pain meds which could affect your concentration. Of course there isn't any guarantees that the SCS will help you but hopefully it will. Best wishes for the trial. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • It almost feels like fate that a post like this should show up right now.

    I have been in graduate school for the last three years - I'm starting the fourth year right now. The longest break that I have had between semesters is 3 weeks. In 3 years, I have had one semester in which I did not have to request an extension to finish up my work, because I was in so much pain and in such a fog because of it.

    I never realized how much of a problem the pain really was until after my SCS was finally put in. A couple of weeks after surgery, I sat down and studied for 6 hours straight. I can't remember the last time I was able to do that. In the last couple of days I have read 200 pages (1/3 of my textbook) and actually remember a lot of it, which is practically unheard of.

    I actually feel like the world was in a fog before, and everything looks completely different now. School is so much easier than it was. I am really excited about how things are going to go from now on, and I can actually see finishing my Master's degree and getting my PhD now - before I always wondered if I really could.

    Yes, you could do school before you try the SCS trial and implant. But that doesn't mean you should - to be honest, there's no real advantage to it. The pain will not help you in school. Going through the trial and surgery probably won't make school any more difficult than being in crazy amounts of pain would.

    This is one situation where the cost/profit analysis makes the answer a dead give away, if you ask me.

    Good luck with school!

  • Thank you all *so* much for your feedback. I very much appreciate all the wonderful insights you have shared.

    Chilerox, it is especially helpful to hear from another student who has been through this. You absolutely nailed it- I teared up a little bit reading how you can now sit and study. I feel like that is almost too much to hope for because I can't even remember the last time I was able to *sit* while studying. It is such a simple thing, and the fact that you got that back fills me with hope and courage. I know everyone responds differently to the SCS, but to even imagine that there is a chance to get that back...

    Thanks guys :)

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