em68,

i just reread that last sentence and i couldnt understand it, so here is what i meant to say...

em68, good luck to you. if you want to, you can pm me on any questions....

mike

I have a SCS implant on 12-18-08 and the out come was bad.

I had considered a scs if it gets beyond what meds will fix, but I don't think so now. Thank y'all. Seems that anything invasive has a good chance of making it worse.

I just had the surgery at John Hopkins on August 8th. The scs has helped me get off all of my pain meds even my gabapentin. I only take Advil now. I do have a pain in my back which is where my device is implanted. I feel like everyday is getting easier pain wise. I can start physical therapy in two weeks. I can't wait to be able to lift things and stretch. I just need to work really hard to get my life back on track. I do feel like I need therapy to help cope with my fears of re lapsing or getting hurt again. I feel pretty traumatized and I'm embarrassed to admit that to my loved ones.

Trust your instincts and see someone. While your family and friends may be sympathetic, it is unlikely they really understand what you have experienced (I could never have imagined going through anything like this). You might consider finding a mental health provider who specializes in PTSD, chronic pain or CRPS (if you can). Apparently 90% of patients with chronic pain have depression +/- anxiety, so this is a normal part of the process (not that the process is normal). I can't speak to the efficacy of a SCS, but common things being common, you may have a flare or some other injury in the future. Having a plan in place for dealing with that can reduce some of the anxiety and may reduce the impact of the flare. Dr. Michael Moskowitz (Neuroplastix) emphasizes this. However, I really do not want to diminish the trauma you have experienced and the importance of getting help to heal from it.
Kind regards.

Hope helps to understand and also learn the does and don't about scs and also the benefits and disadvantage about having scs ,is a huge deal.
Huge story and get ready to read and forget my mystakes ,I'm flaring up badly and my hand hurts real bad also a bad headache is been my day battle today ,hope I can still help ,best wishes and I'm here to answer any doubts you may have.
I do have an spinal cord stimulator ,boston scientific ,during my trial period ,that was for one week ,I was for the first time in my dificult and miserable life know what being living in hell was seven days without sleep,not being able to sit or rest do to the pain caused by the wires connected in my back I had the trial for lumbar area to treat my foot and ankle right side ,problem was ,I sleep inn the right side and also get up same side and the fiirst day the tape and wire was giving me some pain,called the dr and tell him,he said was normal ,so I keep going, next day ,well I will said following becasue I couldn't sleep at all,I was looking a way of how to sleep and I figures a recliner will be beneficial but I couldn't afford it so I made one by putting pillows and stepper on a computer reclining chair ,was ugly but help me at lest to be able to sit with less discomfort.
Following days ,I felt some relief finally on my foot ,but my back was having serious issues , I got allergic reaction to the plastic tape he dr use to seal the stimulator and also reacted badly to the iodine,was having sever hives in my whole body and serious blaster on my surgical sites,he told me to take Benadryl and apply also cream and still keep going ,I did.
By day 5, I was prescribed since the begging norco 5/325 low dosage for extreme pain,I normally don't take pain meds and also I'm allergic to them,got cosmtipation for five days and nausea. Called the dr and he told me to get some ducusate sodium tabs or suppositories and stop the NorCo ,keep taking Benadryl and more cream, well was like that ,severe constipation ,I never been so in hell and unable to ask anyone to help me becasue ,what can anyone do to,help you, I was desperate ,constipated for five days ,my period got suddenly stoped and got some much allergy,I really can't tell if the scs was really totally beneficial when I was dealing with so much.
Finally the day to remove came ,they pulled the tape and pealed my skin to the point I was bleadimg with blisters and dr told me ,just add Benadryl for I itching and neosporin for the bleadiing blister , my relief with the scs was ok but the whole trial was not a great experienced at all.i have to say, I don't know I was so unfortunate to be allergyc to surgical tape,iodine,hydocodone,and the relief I feel was good on my foot but honesty ,Imwasmt sure at all if the relief was enough due to all the side affects a developed .was not my best week ever,and was closing Christmas days in 12 , 12-12-12". Someone told me not to do it but my body can't longer wokeed as I used to,I tried everything dr put In my way,and nothing worked,so I decided ,yes it was ok go to the same trauma and get the permanent this time I knew what happens and wll know how to handle .
I got the permanent unit jan 21-13, I had different tape ,I had diferent pain drugs ,I kept my chair and a week later he wll check my incisions ,I was afraid of then to pull my tape again the way the did and got more blister ,so I asked my husband to help me to loses the tape , I was so surprise when he told me my stiches look ok,so,I ask the one next to my spine should be two and he said no they are six and the one on the buctoks are seven , I asked to give me a mirow ,I was told something dofernt ,I saw them and I almost fainted. I almost passed , I saw the stiches and realize ,this is what my life will be,and suffer a terrible panic attack and cried sitting on the corner of my bed thinking,with this ,I won't be able to work I was devastedted but the scs was working ,but me want ready for all that stress .
Next day the dr official checked me and the rep was there as well making sure my battery and signal were good,and it was, it was working ,my foot was hurting little less
Around march I went to psyiclcla teraphy and did goog,was finally able to walk without an ankle brace that I used for one year and regain some movement ,but something was off,my back was hurting and my buttock ,you all my recalled I poste the story about my buttock hurting so much for almost a year and dr tel me wasn't the surgery ,I asked for rx or scan and see what was wrong ,he sent me to,work by April and I cloudnt work,I wasn't able to stand more than and hour so they company sent me back ,dr put me under medical,leave o ttd, my buttocks created back and leg pain,my good leg was hurting so bad ,he said as lo as the trigger area the right food gets control I will be fine,so he did some reprograming and was getting some relief on my foot but my buttocks got me crazy.
Almost a year after complaingj and my primary dr order to recheck my device ,he agreed on ask the wc authorization to repositioned on my abdomen,that happened on jan 20-14 almost a year later,I came a week later to remove the stiches and asked what was wrong meh said nothing just some body fluid and ,left I didn't see him after that ,I have new dr who stared to deal with my case his colleagues who told me, you had the battery for so long ,the fluid trap inside plus the tissue already form causes you to have you sciatic nerve damage and possible ,you rsd was already on your leg while the surgey happens ,sorry we need to ask the Ins to do and scan and see what is damage ,three doctors told me same thing , but the scs was helping me to walk again,not normal but again,I was able to wear tennis shoes after almost two years ,dr decoded no more custom made ankle brace but some custom made inserts and will be ok.well I got more pain now on my goog leg, my abdomen site was better positioned ,is being now nine months ,hurts still because a month after my repsoitong I had to have an emergency surgery to remove my gallbladder ,so ii had another surgey a month after but the dr who did my gallbladder took good care of me also the anesthesiologist ,they new about rsd,they gave enough meds to control pain at least for a week ,take good care of me before and after ,my incisions hurt when rsd flares ,all of them,my old inscision on buttocks is still triggering more and severe pain and is swollen more,literally my butt hurt and I can't stay sit for longer than 30 minutes ,is real uncomfortable ,
The. I asked if finally with scs my bone pain will be gone,and I got the surprise of my entire life ,I was told ,scs doesn't cover bone pain , I never knew that fact,I had bone to bone rubbing ,when back to use ankle Brace,approve to see an rsd specialist who will comfort my rsd was spreading all this time ,I do walk thanks to the scs but I walk with special shoe inserts and anklle Brace, I patch of lidoderm or flechtor ,or tramadol or meloxicam,I don't take by my own option pain drugs controls ,not now ,will be until I can no longer handle,this pain .
I don't sleep ,I got anxiety ,insomnia , panic attacks , my scs did work but not for the purpose I was told, now it's been programmed to cover also part of my left leg and dr comsider I need one also for my upper limbs and neck, my rsd on my right foot and osteosporis I develop is stable according to my dr but he his afraid to develop osteoarthritis , I think my knees are already suffering from something. I felt twice this past days ,I get so desperate and one day I had enough ,I was going to the restroom and I got mad because I got terminate from my job ,I was sitting on the toilet top just thinking what will be my next step ,all I saw was my ankle brace and shoes and I got so sad and mad ,I tossed them outside the barroom ,my husband was standing at the door looking,I wanted to toss everything that reminds me ,I have rsd , and I cried like I never remember I ever cried in my life , I was getting finally frustrating about all this ,I who always believe in the next big thing will come ,give up and get finally all the cry I holded for years , my family was there suffering with me ,saw me crying like a baby and that what it,I get up ,grap the phone and demanded the dr to order and rsd specialist which was approve but there is no one on my are .
I got new pmp and new ortho after the ins disagree with the old dr about my conditions they all got suddenly not longer part of their network,but I know the truth,my rsd was spreading on stage 3.
Scs did work ,I'm walking but rsd took my job,I'm 39 and recently declared disabled in court ,40 % and company Agee even though they dint want to !to pay for my medical expenses for life and rehab to get another job!approved my other scs which I will get next year !if pain let me ,I want to rest and have my family happy in November when I will be turning 40 , rsd is the worst I ever encounter ,my life before was sad in some yrs but got worse work rsd.
Rsd can be control with scs but you have to be real demanding with your dr , I'm happy having the stimulator battery on my abdomen work Bette but the damege done is there , if you feel something is wrong don't let the dr tell you nothing is wrong becasue it is.
Scs gave me some freedom,I can walk ,I don't drive ,I'm scare ,I need to turn turn device off and right away I feel pain but it work, I regret that no one tell me the bone will never be relief by the scs just the rsd symtopsn, I wil never have a bone fusion due to rsd , I will get more scs , if ketamine or calmare will offer first ,I'm willing to try that first ,if not scs will be again my relief ,know I understand the difference on reliving bone and nerve pain,was totally different,if I knew I won't get bone relif ,I woulnt do it at all, work in the rsd but not my buen pain and I will have bone pain for the rest of my life and also the risk to develop osteoarthritis ,my butt hurt.
I do not saying is bad , is bad what the dr did , even when I was very bossy and demanding I got hurt.
Scs work,I won't remove my becasue I can walk again,I'm hurt because I was missed Informe and also the dr lied to me and left me because he went Into medical leave ,glad that happens so his three colleges open my eyes and tell me the truth and even get me a referral for rsd specilsist.
I got hurt ,maybe in My case the psorioning wasn't the right place or like the dr said ,they sure rsd was already there and get worse with the surgery another dr told me,if I'm flaring,never for shots or surgeries to avoid further complications .
Scs do work, do relif at least 50 % but for me to be accepted to work !I needed to be able to vent !to do suddenly tiwistings, reaching shelves !carry heavy boxes !scs don't allow you to do that any more. And AME decide to declare me 29% disable and not able to carry more the 10 pound combine in a day, no vending ,kneeing,reaching ,pulling ,suddenly twistings and no standing or walking at all!siting only and no using ladders or stair to avoid risk to hurt my foot already with ostheoporosis !my company terminate me in June 2014, but I was realized to work May 2013 and my manager told me lies to avoiding have me there,since than I still had not got paid or even HR being notified of their decision,no one know ,so I'm looking on my leagal rights now .
I tolld the whole story because at the end I got good result for my rsd , many other people got better luck,i didn't , but I tell eveytihgh I remember to all who wants to get scs can also learn,many time things don't go well at the beginning or in certain point,my intention is not terrorisce anyone but just tell you things happens and you will over come,is hard ,you cry but is normal for us.
I don't regret to have scs ,I even will get more cables to cover more my left good leg knot good anymore ,and one for my upper limbs ,but I do regret not being told ,my foot and ankle will never recover ,I will never wear my shoes or being the fancy woman I was ,marchig shoes ,high heals and pretty dresses ,nice purses ,I hate them now ,everything is in boxes ,but scs do work ,but doesn't work in a broken heart .
Try ,take a chance you will get some of your life back ,not all,I'm honest ,it does work,with the right dr ,rep and settings but took a long way for me to get here,a painful way,I'm nit telling you don't do it,I'm telling you try,my story is here for you all to learn,if something feels off ,is off ,fight for your rights ,I trusted my dr was my mistake,but I will get more scs knowing that I really need to stop the spreading ,and will work for that purpose ,is a long story,sorry but please learn from my mistakes and also know when a dr is nit right and don't trust them, I wasn't right ,I joke a lot about having rsd and is a pain in the butt ,literall, I don't mind if some joke about it ,to this point is even funny.
Learn a lot from everyone ,we all had dofernt stories ,I don't know how to said my was , what I know is scs let me walk again,but the price I paid was high,I got no job,and that job was my,life ,my dreams where there ,I know one day I will get over ,nit know ,I'm mourning my losses ,and still can't recover.
Yes ,scs works try if you feel like you are ready,but listen to the signs ,if something feel off ,again I'm telling you is off.
Good luck moosey2me, I don't. Want you to,lose the chance to recover part or your life but learn the good and bad ,not all in bad,trust me,and if you want pictures of my journey,pm your email,I wil gladly send you many,scs trail and surgeries , please just let me know.
Gentle hugs to all, and hope this help someone who might be suffering withiutn knowmg was wrong,with love ,jesika.
Ps. I learned with all this ,pain is also a teacher ,I also learned to many times pretend I'm ok and I'm a professional on faking smiles .

Thank you that is great advice! I'm excited for new things to be happening. When I was on pain medication I felt stuck and depressed. I'm so happy to have hope again. I'm moving to Nevada in a week. I'm going to start physical therapy there and therapy. I would love to find a therapist who specializes with patients who have chronic pain. This is the only place where I feel like people understand and really understand how hard this is. It's amazing to not feel alone anymore.

I'm so sorry all of that happened. I wish you could have gone to my doctor in Baltimore. I think it's awesome that you keep you're hope. I know we all lose it at times but it's so important to try to hold on for hope. I wanted to try the ketamine coma procedure before doing the surgery but it still seems so new so it scared me a little more. I've recently started using medical marijuana to help with the pain because it's legal where I live. It's helped a lot! I especially like this topical cream that smells like bengay a bit but helps with the muscle pain I have right now. I would love for you to try it. It helps and anyone with RSD needs all the help they can get.

Hi Em68
I had my SCS implanted 6 years ago. It covers by lower back and leg. I have Failed back syndrome (4 sickness and more) and the SCS has given me back some of my life back. I know we don't suffer the same diseases but pain release is pain release, and same goes for a SCS.
Can't say it takes away all the pain, but on a good day manages 50-65%, plus meds. However I can say that I cut my meds in half since I got the implant.
I don't know how your SCS was implanted, I have my battery on my hip and the cable for the electrodes is implanted in the middle of my back. Unfortunately this has caused new pain in the middle section of my back, but if I don't over do it, it is manageable. At first I thought I would have it removed because of this additional pain, but the benefits of walking straight without a cane outweighed this new pain.
Because of the installation and the fact that my sickness are continuing to degenerate I am restricted a lot with exercising, major cleaning, etc. Some days I can't do much, but that's not because of the SCS, but rather my body.
I sure hope they will develop the product even more for my next upgrade, scheduled in about 3 years.
I hope you get as much relief as I with your SCS. Don't be shy if you have any questions. I will quit now, seems I have rambled on...Take care,

Welcome Jolegs.