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Back from SCS trial

anjuanaanjuan Posts: 236
edited 06/11/2012 - 8:37 AM in Pain Management
I just got back from my SCS trial insert and thought I would share my experience while it was still fresh in my mind. I hope this helps others who are considering the trial. I am going to put a lot of details, so I hope it isn't too much for some of you.

I was scheduled first thing at 8 am. They got me hooked up to the IV, met the Boston Scientific rep, and the procedure was not actually started until around 10 am. At the time they gave me meds to relax me, but I wasn't knocked out. They started taking pictures of my spine, and my Dr. started placing the leads. They turned on the SCS and the stimulation was in the front of my legs instead of the back of my legs. I started hearing the Dr. saying things like, "Amazing, look at that" to the rest of the staff. To make a long story short at the end of the procedure which took 1.5 hours he told me that my anatomy was different and the nerves that are usually for the back of the legs where where the front nerves usually are and vice verse. So they were twisted. My Dr. had to map my nerves during the procedure and ended up having to twist one lead over the other. Lets just say that the procedure was painful and there were times where my legs were shocked and literally jumped off the table. During this the rep kept asking me where I was feeling the stimulation and the Dr. would adjust accordingly until they got things how they wanted.

They then taped everything up and put a soft corset around my midsection (I didn't know I was getting a corset). Then the rep took over and started working with me in my room to create 4 programs for me. Unfortunately, I got up and went to the bathroom and when I came back the programs felt totally different and I just felt them in the front of my left leg. My programmer was so awesome. She got her computer back out and had to totally create 4 new programs. She doesn't think the leads moved, but she wasn't sure what happened. She was glad that I spoke up and was happy to take the additional time with me. She is going to call me tonight to see how things are going and we are tentatively planning to meet up tomorrow to further adjust the programs. I just can't say enough positive things about how sweet and patient she was with me.

As far as the stimulation, it really does feel like an internal TENS unit to me. Right now it isn't going up as far on my back as I would like, but I am hopeful that we can continue to work on things. I am getting good coverage in the back of my legs. The thing is really very positional. I have already found out the hard way that I have to turn it down before laying down because it can get really strong. I do have pain in my back area from the incisicion and a pain med for it, but overall I am doing fine. The procedure itself was really painful and wore me out. I was crying at the end of it. But I hope this doesn't scare anyone away since this was because of my unique anatomy. My Dr. and everyone was really sympathetic and I am still happy that I decided to do the trial.

Sorry for the book. If anyone has any questions I would be happy to answer them.



  • Congrats on a successful beginning. Let the games begin.

  • I am glad that you had a good experience with the rep. It is great that you gave everyone the details of your trial. I know a lot of people who are considering a trial will benefit from your post. I hope you get a good amount of relief in the next few days. It sounds like the stimulation is helping you. Keep us posted.

  • Welcome to the world of invisible stimulation. Where you think that everyone can see the pulsation of the SCS, yet no one can. Unless of course you have a cat ...

    Good luck with your trial. Try to not just lay around during this time. You need to find out if the SCS can deal with your every day pain.

    One thing that I found helpful during the trial, was that after the first day or two, shut it off in the middle of the day for at least and hour or two. It will show you really quick, just how much you are or are not benefiting from it.

  • Hopefully you are on your way to getting a life back.

    I also found out the hard way about laying down with my stimulator on!! I swear the top of my head was blown ten feet in the air!! Even in the best of times I can't get up very fast so it was a struggle for me to get back on my feet!! Every part of my body was in a spasm.... even my ears!!

    Good luck on your trial.
    Patsy W :H
  • Thanks for all of your comments and support. I had a rough night. It was difficult sleeping because of the incision pain. I finally gave up at 4am. This corset is also driving me nuts. I was thinking about going into work today, but there is no way that I could handle my long commute, etc today. So, thankfully I am able to work from home today.

    C, there is no chance of me laying low during the trial. Tomorrow is my 5yr old's b-day party and my family is coming into town tonight. :) Thankfully it is my mom so she can help out, and we are having the party at a place that does everything for you.

    I really think that the stimulator is helping some. I am trying to go longer without using my meds. I will also be meeting up with my programmer today to tweek things some more.

    Thanks again for your support!

  • I feel bad for you that you have to wear a corset. I just have half my back taped. I wouldn't worry to much about the meds part. Take the time to play with it. Determine what works and what doesn't work. The way I see it, the trial is there to determine if it can help. the only way to figure that out is to put your self in situations with and without stimulation to determine if its working.


  • I would not worry about taking your meds. If the meds help lessen the pain, use them. My doctor told me from the beginning that I would probably still need medication. He was right. I think for many of us with the SCS it is a combination of things that help us. I use meds, the SCS, heat, nerve ablation and nerve blocks. Sorry that the corset is bothering you. Can you make it less tight? It will help protect you during the party, so it is a good thing.

    Take care,

  • I think many doctors do things different. I was told to take my medication through the trial...on the pain meds I was told to take it when I felt pain. He told me not to try to extend the time...but rather see if the time between changed on it's own. I thought this was strange but I was able to stretch my time out. I don't remember how long it was...I had 80% relief. I now have the permanent unit and wonder how I lived without it. Meds are way down, I am happier, my attitude is different, I feel like a changed person.
  • They told me that I could loosen the corset so that has helped that issue some.

    Monib, I like your Dr's explanation of things and when to take the meds. It really makes sense to me.

    I don't know if anyone else will understand this, but I feel like I am learning more about my pain through this trial. I previously thought more of it was from the back, with some leg pain. But now I am thinking that more pain is actually in the legs than I previously thought. Right now I am pretty certain that the stimulation is in the right area, but it is almost like it is highlighting it more while somewhat helping it. Does that make any sense? I am hoping that it can with tweeking it will get even better. My Dr.'s office said that if I need to get with the programer every day during the trial that I should do so.
  • I cried too. I know they had a really hard time getting those leads through the scar tissue. I told the doctor that once she got done with me, she could go to Guantanamo and torture prisioners. She said they would probably throw her into a cell (because she was Indian). In any event, have fun with the party today and put my vote down on the side of taking your usual meds. You want to compare apples to apples after all. Susan
  • No it doesn't sound strange to me that it may be highlighting your pain some. Some of my experimentation so far has not gone so well. Take note of the bad stuff and see if the Rep can adjust you a little.

  • So how is the trial going for you today? Are you getting any relief? I sure wish I had the magic potion to sprinkle on all chronic pain suffers. I would heal you all if I could.
  • Thanks for asking how things are going. I am happy to say that the incision pain has gotten better already. Hopefully I can get a good nights sleep tonight.

    I met my programer around lunchtime and she spent another hour with me modifying one of the programs that I liked and created three entirely new ones. Unlike Dave I was getting too much stim in my feet which bothered me when I walked so I had her tone that down for all but one program for when the pain does go to my feet. One of the hardest things to do when she was programing was to try to get the stim in my back without it ending up in my groin area. This was a delicate balance.

    So far I really think that the stim is helping, but I am still couldn't put a percentage on it. Right now I think it is going to end up being over 50% pain relief. I can definately see getting used to it as background noise as some have described. It does feel pleasant to me. I think with my daughter's party tomorrow it will get a good workout.

  • Glad to hear that you were able to get reprogrammed. I had to visit my Docs office also today. Sitting at my desk opened the entry points for my leads. Had to go get re-taped. I created some really nice settings for laying on my ass on the couch last night. It's been several years where I can just kick back without any drugs in my system. Here's to having a much more comfortable weekend than usual.


    P.S. Happy Birthday to your little girl.
  • Since my SCS is cervical and not lumbar, I have not experienced the exact issue with stimulation of the groin, however I think it is similar to a c-spine SCS causing stimulation of the chest wall. Depending on the pulse width of my signal, I can either cause the chest wall to be stimulated or remove the stimulation from that area. It's uncomfortable to the point it can take your breath away. By simply modifying the pulse width I can pull he stimulation out of there.

    Also depending on how the leads are set up to fire. Usually in lumbar SCS's, the idea is to create a more focused signal that is driven deeper, because the dura is thicker in the lumbar region and it takes a bit more juice to get the job done. However it can also cause muscle spasms if it it too focused for the individual.

    To illustrate this, you will find that those who have c-spine SCS's, will run their IPG at lower amplitude settings than those with L-spine SCS's.

    Another thing about neurostimulation, is that it can trigger the bodies natural endorphins, which is something I use to my advantage. In the morning or any time during the day that I have that "I can't move" ache, I will position myself for a max coverage "treatment" for about 15 minutes. After doing that, I have fewer aches and pains and can tackle the day.

    Dave, I found that I almost felt guilty for not needing the use of narcotic pain meds anymore thanks to my SCS. I feel like I have an advantage over most other CP sufferers, simply because I can "treat" myself anytime, anywhere and no one is the wiser.

    Okay now I'm rambling. Good luck with the trials over the weekend.

  • Yesterday was a really good day with the trial. I went shopping, had my daughter's party (which went great), made dinner for my family with little pain. I only ended up taking one norco (and I took it when I felt I needed it) all day when I usually end up taking about 3 of them. So I feel like this thing is a success so far.

    I turned it off at night since I felt I didn't need it. Today I am going to be doing more shopping at the mall with my mom, see a movie and dinner. I think it will be another good test of the system.

    They wanted to take it out on Monday, but I was originally thinking about asking to have it left in until after I went into my office on Tuesday since Monday is a holiday. However, I am now thinking that I really don't need to do this and may just have it taken out on Monday so that I don't have to take any more leave from work. Right now I am thinking that I will need that leave for the SCS permanent surgery. But I am waiting to make my decision until after today.
  • One thing that still concerns me, is the fact that you have only had 2 surgeries and your pain can be controlled by 3 Norco. Please do not think that I am trying to diminish your pain or say that you aren't having a tough go of things. I'm not. What concerns me, is that most people do not realize what it is like to be burdened with a permanent SCS implant. While some doctors seem to tell their patients that it's no big deal to remove the SCS if they determine you need further surgery, the reality is, that most don't want to touch you once you have a permanent implant.

    Please just know that it's not something to take lightly. It's not like a coat that you can take off when you want. Your life changes forever. It's a change that no doc or rep can prepare you for or warn you about. Unless they have one themselves, they will not truly understand.

    Yes it is a fantastic pain management device. Yes it has helped a lot of people. And obviously from what you are saying, it has helped with your pain. The question to keep in mind though, is are you willing to give up on a lot of freedoms that you now have?

    Our bodies have quite a remarkable ability to survive the insult from medications and supplements. I have taken a fair share of them for many years and will continue for many more. Monitoring through regular blood work and check ups keeps me and the doc apprised of whether or not they are causing me any issues or risk of long term exposure. If you strap yourself with an SCS and still require the same meds, only at a reduce dose, are you really gaining any ground? I still take the same meds I did prior to getting my SCS, only difference is now they are able to handle things better. I cannot have an MRI, so if I have an issue later down the road, it will be more of a complicated issue to determine if surgery is warranted or if it can or cannot be done.

    Anyway, just don't get caught up in the "excitement" of the day. Think things through and make an informed decision.

  • I have to agree with "C" 100%. You are so very young to have an SCS implant. I am amazed the Doctor did it for you.
    If you should require an MRI down the road you will not be able to have it.
    Sure they tell you it can be removed but that is easier said than done. Once you have it, it is with you for life.
    Please think long and hard about the permanent implant.
    Just my thoughts and my thoughts aren't worth much.
    patsy W :H
  • I appreciate your comments. Can you please tell me more about the freedoms that you have had to give up and the effect that it has had on your lives? I really want to know more. You can PM me if you want.

    I think it would be a stretch to say that my pain is controlled on 3 (or 4) norcos. That is what I take. I have been in pain every day for the past 7 years. I don't take more because I can't stand how it makes me feel. I HATE the foggy headness and other side effects. I am still working full time, but I really struggle to do so. I believe that I have only maintained my job because my career has always been very important to me and I am the primary breadwinner for my family. Plus my boss lets me work at home twice a week. But my career has suffered, many times I am a grouch to my coworkers because of the pain. My friendships have suffered, I don't do many outside activities besides work. I can barely make dinner for my family in the evening because of the pain and my husband has to do most of the household chores. There have been so many times that I have told my daughter that I can't play with her because I am in pain.

    I know many of you are much worse off than this, so I don't expect sympathy. It was just to let you know where my quality of life is at with the norco. My Dr. thinks the SCS is a better alternative to the meds. He said because I am young is part of the reason that he wanted me to try it out. Over the past two years he has tried every alternative under the sun.

    I have decided that I am also going to make an appointment with my general practitioner, who I also trust to discuss the pros and cons of where I am at. I understand about the MRI, and it does make me nervous. I don't take it lightly. But I am hoping that since some of you now know more about where I am at you can tell me more about the freedoms I would loose. I already feel like I have lost a lot.

    Oh, and I am now 38. I haven't updated my siggy. :)
  • As far as the burdens of the SCS.. there are the little day-to-day things, like watching what you lift, how you twist, etc. Even once the leads are fully scarred in and migration is less of a risk, there's always an awareness in the back of your mind. It's a little tiny voice, reminding you that even though your pain is better, you're still not normal.

    While we're reading forums, researching, and/or discussing the SCS with other patients and our PM's, the whole notion of neurostimulation becomes somewhat commonplace. It's very easy to forget that neuromodulation is truly "cutting edge" technology that is rapidly evolving and a lot of doctors don't have the slightest clue what it is or how it works.

    Within a few months of my permanent implant, I found my balance between the SCS, medications, and physical rehab. I've been seeing my pain management doctor monthly and we've made little tweaks, but overall I've been very stable. With my pain managed and my stress reduced, it seems like a lot of my other problems resolved themselves (repeated colds, flu, etc) and I've have only had to go to my PCP a few times.

    About a month ago, I fell off the proverbial pain management wagon and a couple of weeks ago, the whole thing turned into a big mess. I had a medication reaction that involved my patches, so the only ting I could do was take them off. Obviously, that caused a huge problem and like all good reactions, the worst of it hit on a weekend.

    The reaction caused multiple ER visits for uncontrolled pain and the trouble started with the triage nurse. I told her about the SCS, then she clicked around her computer for a minute, but couldn't find the procedure to add to my history. I gave her the alternate names, but she still couldn't find it. Finally, 3 nurses and 45 minutes later, they seemed to figure it out and go on with my history.

    When I finally got to see a doctor, he said the first thing he had to do was run some cardiac tests, because my blood pressure and pulse rate were dangerously high and according to my history, I had a pacemaker. It turned out the triage nurses didn't find the SCS in their computer. Since the thing I was describing sounded to them like a pacemaker, that's what they added to my history.

    By that time, it had been well over an hour since I arrived at the ER and I'd spent 90% of that time just trying to get them to understand the SCS. My pain issues still hadn't even been approached, much less treated.

    I finally managed to convince the doctor that I didn't have a pacemaker and that my blood pressure was dangerously high because my pain was way out of control. He agreed to give me an injection for pain, then reassess all my "cardiac" symptoms.

    About 20 minutes after I finally got the injection, the nurse came back in to check on me, I told her I thought the shot was enough on the medication front and that the SCS could probably cover the remaining pain if I turned it on. She got all wide-eyed and said she needed to ask the doctor before I did anything.

    The next thing I know, I'm signing a waiver saying that the hospital and staff were not involved in my decision to turn on the SCS and that if "something goes wrong" then I'm not going to hold them responsible. They didn't even have enough knowledge of the SCS to explain what "something" they thought could possibly "go wrong" - but they knew they didn't want any part of the responsibility for me using it.

    When you find yourself in a situation where you're working with a doctor that doesn't have a working knowledge of the SCS, whether it's in the ER or a routine appointment for an unrelated health issue, the SCS can wreak all kinds of havoc on our care. Some doctors blame it for things they can't figure out, others are so afraid of it they barely manage to assess you properly. In the end, you really have to be able to advocate for your own care and make sure you're not getting blown off because, again, you're still not normal.

  • BionicWoman outlined a very real issue that the SCS presents ... ignorance. Although neurostimulation has been around since the 1960's it is still not as widespread and widely used as many would think. BW is correct in that you can easily get a misleading impression from reading about it here and a few other places on the Internet. Of course like any others, docs like to try the latest and greatest tool in their arsenal against pain. After all we are there asking for their help. They start with the basics and work their way from there.

    One thing that many spine patients don't understand until they've had a few experiences of their own, is that Pain Management docs don't typically look at whether there's any surgical "fix" to your pain issue. They are there to address the pain in manners that neurosurgeons and ortho surgeons cannot or will not. So many of them put blinders on to the potential of someone being fixable with surgical intervention. Many patients are sent to Pain Management because they have told their surgeons that they don't want to undergo any more surgery. So it's like getting referred to a paint shop when you need body work, engine repair and upholstery work. You get a fresh coat of paint, but still have dings and dents and torn upholstery.

    Living with an SCS is an every day every moment thing. Even though you get used to the stimulation, your pain or the SCS will remind you at the most inopportune moments that you are no longer "normal" as BW so nicely put it. Going to the store, a movie, to dinner, taking a shower, swimming, on a walk, to a wedding ... you name it, it all changes. You have to constantly be alert to ways you can damage the SCS or hurt yourself. Bumping it, bending too much, lifting too much, wearing the wrong clothes, sleeping in all but one position, charging, having your charger with you when traveling, having your patient programmer with you ALWAYS. Security systems are a chore and if you travel by air, expect to be hand searched every time. I just about came unglued on a TSA agent who nearly flipped my IPG in the pocket, trying to make sure it was under my skin.

    A flipped IPG will call for surgery to flip it back, otherwise you will be unable to charge. Finding the right way and time to charge takes a lot of trial and error before coming up with something that works for you and your family. Planning any activity also means planning your charging around the activity. Sitting in many standard seats is uncomfortable due to the IPG either being pressed on or your clothes pulling on the IPG. I constantly have to take anti-inflammatory meds because activity causes inflammation to develop around certain parts of my SCS. So there's a med I wouldn't be on were it not for the SCS itself.

    I've had my SCS since May of 2008. In April of 2009 I underwent 2 revisions to repair the system that I tore loose through activity. Of course in a few years I will have to have surgery to replace the IPG when the battery gives out. So if avoiding surgery is anyone's goal for getting an SCS, they are sadly mistaken or misinformed.

    Because I can appear to be very normal and active, most people do not know I have an implant. Many jobs that I would like to apply for, I cannot, because I can no longer do some basic things. One of my big concerns is performing CPR or any BLS. I normally work in jobs that require CPR and BLS certification to be kept current. Now don't get me wrong, if need be, I'd jump in and take what ever actions were necessary, but I can guarantee if I were to perform any of the such, I will most likely rip part of my system loose and require surgery to repair it.

    Automobile accidents are notorious for causing lead breakage, requiring complete removal and replacement. There's no guarantee that the doc can get new leads back into the same area the previous ones were in and no guarantee of coverage as good as it was originally. Also if there is any issues with say for instance signal strength reduction, most docs and reps will try to reprogram and take a wait and see approach to see if complete failure will occur. In April when I underwent the first revision, I had great coverage for a week when suddenly the coverage dropped off on one side. I ran a lead diagnostic and found that 1 out of the 8 contacts on 1 lead was failing. The rep verified this with his unit. Now keep in mind I have an outstanding rep and doc. They both told me that were it not for the fact that I lived over 7000 miles away, they would have taken a wait and see approach. Since they couldn't do that, it prompted them to further investigate and they found one of my wires sliding in and out of my IPG that required pulling the IPG out of the pocket to repair it. They could not understand (it was beyond their ability to comprehend) that I could feel such a tremendous deficit in the function of my SCS. They consulted with the technicians and were told that I shouldn't be able to notice much if any deficit in performance. They were wrong.

    So basically even with such an outstanding team, had I been a resident in the local area, I would have had to deal with this until such time as the wire pulled out completely or something else failed. These professionals all mean well, but they really do not understand what these systems they are implanting feel like to the recipient.

    I could go on and on, but I hope you can begin to see that although neurostimulation has given me a chance to live again, it is not without its price and not the "walk in the park" that the videos and doctors and reps all want you to believe. It is a huge personal responsibility for me as well as my husband and health care providers. It has changed my life forever and forever changed my life.

  • I love to post a comment after Bionic and "C" because they say it so much better than I can but I agree 100% with them!!
    Your young age really concerns me. You never know what will happen down the road. I have 2 spinal fusions and thought nothing more could go wrong with my spine. Well it is not my spine I am having a problem with. It's my shoulder!! I need an MRI to see what is going on with it but can't have one. I can only hope my Ortho can figure it out with x-rays and his knowledge of joints without the MRI.
    Also a lot of Doctors think that once you have a stimulator you no longer need pain meds and nothing is further from the truth. I am sure Bionic and "C" will both agree with me on this.
    As Bionic said....you are never "normal" again. You always have to be aware of your implant and there are a lot of things you can no longer do and as they both said a lot of problems can crop up.
    You have to live with it the rest of your life. You have a very long life ahead of you.
    I know the thought of some pain relief sounds wonderful but if your pain can be managed by oral medications I would not have the implant yet.
    These are just my thoughts and at times my thoughts aren't worth much.
    Patsy W :H
  • Age is the one thing that doesn't actually concern me, but I guess that's because I'm young...er. ;)

  • I appreciate all of your thoughts and input. I am one who truly believes that the more information that I have the better. I want to make my decision based on the complete picture, so thank you all.

    You don't know how many times I have heard, "But you are so young to have back problems". My reality, like many of you is that my back will never be "normal" regardless of my age. I went to my PCP today and had a long discussion with her regarding the pros and cons to the SCS vs meds. She was really helpful.

    I got the SCS taken out late this afternoon because the corset was irratating my skin so much and I am already off work. I know that without a shadow of a doubt that the SCS greatly helps to reduce my pain. The usual pain is back and I already miss the SCS. As I said before, my pain is not managed well at all by the current pain meds that I take.

    Again, thanks again for all of your input. I have a big decision to make. I have to determine what is in not only my best interest, but the interest of my family. I have a responsibility to be the best mother I can to my 5 year old, and that is my top consideration.

    C, by the way, I actually laughed at the glowing videos from Boston Scientific. Believe me, I know how these companies make the SCS sound out to be all sunshine and roses. Part of my current job for Medicare is reviewing marketing for Medicare managed care plans so I know just how far companies can try to steer people for their profits.
  • You'll never see a scene in one of those videos with a person sitting on the pot, explaining how their SCS has given their life back, but the effort involved in certain potty activities causes a stimulation spike if you don't turn the SCS off first. =))
  • I don't know what you call young or old, but I am 42 and a single mom to two boys ages 16, and 10. When I went in to have my trial removed I had a list of questions for the doctor. I know he thought I was out of my mind. I asked about being in an accident and not being able to talk to the doctors...would they know how to turn it off, how to care for me. In this area doctors are required to go through a seminar about SCS so they are all well aware of how to treat a patient with one. Now...they don't understand all that goes on and how it works...but they can treat a patient who has one. In an accident they do X-rays and would see the unit and know what it is, thus them sticking me in a MRI wouldn't happen. I further asked about if I every had to have surgery what was the chance they would cut the lead. Please remember I have two under the skin just above the pelvic bone. My doctor told me that if they tried they could cut the lead. He placed them where they would never cut me. Finally I asked about MRI's in general. My doctor told me that the CT was a better diagnostic tool but insurance wouldn't pay because MRI's were cheaper. So basically now my insurance has no reason to deny a CT. Much better diagnostic tool. I too talked to my primary doctor because she would be the one prescribing my pain meds. She was all for it. She said at my age taking so much pain medication would harm my kidneys and liver.

    As for extra care. At night I sit down and evaluate my day. I basically do a daily assessment to remind myself of where I was and how I feel and what I would like to have changed next time I see the rep. I also have a calendar and I mark when I charge so I know how many days before I have to charge again. I do carry my programmer around with me...but I carry a purse so that isn't that big of a deal. I am careful not to bump my implant and protect it but that has become second nature...not something I actually think about. I know I am not that far out...and shouldn't be doing this but I have bent over and picked things up off my living room floor. You do bend different and some of you might be able to tell me if that returns to normal the further out you get.

    I guess basically I have had such a good response that it is just second nature and doesn't interrupt my daily routine at all. I have a portable charger so I just belt it on and go.

    I will say that one thing is I don't like to mess with the programmer in front of people. Family is different...but out in public I go into the bathroom...because I don't want to answer everyone's questions. They have no clue what a TENS unit is and to explain a spinal stimulator would require more time than I want to invest...basically none of their business if you know what I mean. I have had some people look at me strangly when I have the charger belted on...but I look at them and tell them it is a medical device I have to wear sometimes and I don't explain further and they get the hint. So I guess I am saying if you are sensitive to how people look at you...SCS in public is a little unnerving. I on the other hand will tell people, "If I tell you, you will not understand...so just trust me it is a medical device prescribed to me by my doctor." Usually that shuts them up. I did train a couple of people at my work on how to shut the system off with the Mag. just in case of emergency. They were really receptive and asked questions...and I explained the best I could to someone who knows nothing about chronic pain. Since mine involves the pelvic area...it is a little embarrassing...they what to know what cased the pain in the first place...well if I knew that I wouldn't be where I am now...RIGHT?

    For me having those questions answered by my doctor about accidents and future surgeries calmed my nerves. Then I was able to relax and go with my gut on this would reduce my pain meds and buy me time before I had to have surgery or go on much stronger medication. I don't have the inflamation issue so there isn't any extra medication.

    Praise report...I was taking 12 pain pills in a 24 hour period...now I am only taking 6 in the same time period...and I am only 4 weeks post op. If I hadn't done the permanent SCS there were going to change me to a much stronger pain med and the way I was going...by the time I was 45 there wouldn't be anything out there strong enough. Every year for the past 4 years they have uped my meds or changed the type and uped them 6 months later. I don't think my body would of taken much more. In the past 2 years I have lost 50 pound and I didn't have it to loose. Pain meds kept me from eating, at this point I only weight 101 pounds and I am 5'8" tall' Very much underweight. I know this isn't for everyone...so please don't allow what I have said to over ride your gut feeling. I am now a part of my kids lives where before I was there in bed. Now I do things with them and they say I am so much happier. You have to make the decision on what you feel is right for your situation. Don't let anyone here, Reps, or your doctor talk you into something you don't feel is right.

    Sorry this was so long. I hope it helps someone. I knew this was the right thing for me and my boys...and my quality of life...but not right for those that are doing fine on their current treatment.
  • Very nice and informative post. For those of us who are between the trial and perm implant, you're post hits the spot.


  • I have decided to go ahead and get the permanent implant. If I can get the help for my daughter lined up I will be getting it put in on October 29. I know that some of you think that I am too young, but I am not living the quality of life that I want. Now that the SCS is gone my pain is definately back as well as the medication brain fog. I understand that there are tradeoffs, and both options (meds vs SCS) have big side effects or issues that have to be dealt with.

    I have talked it over with my doctors and my family and this is the best option for me. Am I scared about the surgery and the potential issues that I may face-- absolutely. But first the first time in a long time I have hope for a better life.

    Thanks again to everyone who took the time to post with information and support. I really appreciate it.

  • I don't think your to young, you just need to be aware of and learn to live with it. Once it is in and it is healed for most people it gets to be pretty routine.

    When it was hot this summer I went for days not even turning mine on. Just knowing it is there when I need it is enough.

    Now that it is getting cold the pain is worse, always has been worse in the cold. I overdid some things this last weekend and reminded myself of just how screwed/up bad, etc, my shoulder is. Having the SCS has let me just rest and use it on higher strengths than "normal" days. Without the SCS I would have been at either my PCPs or an ER yesterday.
    With the SCS I can thump the pain into submission, using a rotating pattern of programs and strengths till it is numb, or at least tolerable!
  • No one is ever too young to get adequate pain relief if needed. I suffered through pain since 1974. Finally a couple years ago i had all i could take and went to my doctor. I realized i had been doing more damage than good to my body. I also took alot of different pain meds. They seemed to help for a month or two. Then it was time to up the dose or change meds totally. In June my PM said enough is enough and recommended SCS. I was implanted on 8 July 2009. Yes, it is a little unnerving not knowing exactly what is going to happen during the trial or surgery. But in my opinion, in the end it was not all that bad. You have the tendancy to stoop or bend down alittle differently afterwards because your mind knows whats there. Believe it or not, the worst part of my surgery was the removal of the staples. I anticipated how it was going to feel and actually almost fainted during it. This may not sound funny to people but, I am 53 years old and a retired Army Special Forces soldier. I have been through things alot more severe than staple removal. In the end I am very thankful i had my SCS implant. My pain was almost non existant for the first 2.5 months. Since it has started coming back some, not bad but some. Tomorrow i'm off to my PM again for a reprogramming and talk about maybe using some breakthough meds at night for relief. I was proud that i was med free since the week of surgery. I only took two of my oxcy's after surgery for the first two days. But, I have realized that i need to admit that i may need some meds to make this totally work. 8 weeks of taking it easy is worth getting some or most of your life back. Guess what im trying to say is, Do not be afraid of the unknown. It all seems to work itself out in the end.
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