Implanted Spinal Cord Stimulator

Mear Community Member January 04, 2008
  • Happy New Year To You All,

    I am going into Boston on Monday to see a nuerosurgeon at Mass General Hospital.  I had an EMG in December and he will discuss the results with me and then plans on discussing an implanted "Spinal Cord Stimulator" option with me.  Has anyone had that done?  There are no meds involved, which sounds great to me. I would appreciate any comments from anybody that has had this done, good and bad...please don't hold back.  If this means I could eventually come off of my medications, I would give it great consideration.  Thanks for your helpBig Smile

     

39 Comments
  • Vicki M
    Health Guide
    Aug. 27, 2008

    Hi Mear,

     

    I read your story with interest, but now want to know what you decided and how are you doing?

    Check in and let us know!

    Vicki M

  • Anonymous
    Shari Dillon
    Dec. 13, 2009

    I had one implanted about 15 months ago and it seemed to help with my pain control...although it didnt stop all the pain. It work until I became pregnant in Oct?Nov of 2008 and then around Feb of 2009 when the unit would cycle, I could feel the baby jump and I stopped using it at that point. After the birth I tried it again and apparently from my great weight...

    RHMLucky777

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    I had one implanted about 15 months ago and it seemed to help with my pain control...although it didnt stop all the pain. It work until I became pregnant in Oct?Nov of 2008 and then around Feb of 2009 when the unit would cycle, I could feel the baby jump and I stopped using it at that point. After the birth I tried it again and apparently from my great weight gain (51lbs) the lead must have shifted because the unit still worked but was painful to use. The best way I could describe the feeling in my back was like your mouth would feel when a fork is shoved into a filling in your tooth. Its a colicky ache. So now I have to have a surgical revision to place a new lead. When I did use it in the beginning it did improve the quality of my life, but by no means was a miracle pain reliever.There will still be pain and the amount will greatly depend on placement of the unit leads and your pain tolerance and its not like you can go from bed ridden to a mountain climber in a month. Plus the unit can be quite bothersome depending on where they place it. Mine is located in my left "Love-Handle" area for lack of better description and it does get very sore at times. It sticks out and feels gross like you have a cell phone shoved under your skin. So be careful where they place it and remember things like clothing and the side you sleep on and even if thats an area where your car seat wraps around....this will be uncomfy if placed wrong. Good Luck to you!

  • Anonymous
    Jane Mosgrove
    Apr. 01, 2008

    Thank you all for your honest comments.  I am also considering a SCS.  I'm trying one last epidural block and if that doesn't work, I will do the trial for the SCS.  I've had two back surgeries - L5 - and have scar tissue causing numbness and severe pain in my left leg and foot.  I've had about 10 epidural blocks which helped...

    RHMLucky777

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    Thank you all for your honest comments.  I am also considering a SCS.  I'm trying one last epidural block and if that doesn't work, I will do the trial for the SCS.  I've had two back surgeries - L5 - and have scar tissue causing numbness and severe pain in my left leg and foot.  I've had about 10 epidural blocks which helped for about 4-5 months and then the pain starts all over again!  The last one did not work at all.  My pain doctor said the SCS is like a "last chance" to help with the pain.  One question I have after reading a lot on the internet is that they say that the longer amount of time passed from previous back surgeries the less likely SCS will overcome pain.  Can anyone answer that one?  It's been 5 years since my last surgery and I'd sure hate to build up my hopes that this will help with the pain and not get any relief.  My doc also wants me to start Lyrica - I've tried it before but hated the way it made me feel so I stopped taking it - now he wants me to try again - any comments on Lyrica?

    Again, thank ya'll for all the help you pass on to others.

    • Anonymous
      kris
      Jul. 16, 2009

      Just a note on lyrica, I was on it for almost a year. It made me confused,forgetful,I lost words,fell asleep while playing cards with family,had blackouts while driving on the highway and almost wrecked with my daughter in the car.  While it took away my severe pain from nerve damagein my shoulder, arm and hand from a brachial plexus during a total shoulder,...

      RHMLucky777

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      Just a note on lyrica, I was on it for almost a year. It made me confused,forgetful,I lost words,fell asleep while playing cards with family,had blackouts while driving on the highway and almost wrecked with my daughter in the car.  While it took away my severe pain from nerve damagein my shoulder, arm and hand from a brachial plexus during a total shoulder, the side effects were not worth the  risk.  Good Luck

    • WolfMaiden
      Apr. 10, 2010

      I found both Lyrica and Neurontin to be of no use whatsoever with regards to helping with my pain. (my pain has several contributing factors, nerve damage S1/L5, Fibromyalgia, DJD, no cartilage left in either knee, etc, etc.) Years ago when my former doctor (he moved to another state-miss him a lot, he was compassionate-helps so much just to have someone who...

      RHMLucky777

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      I found both Lyrica and Neurontin to be of no use whatsoever with regards to helping with my pain. (my pain has several contributing factors, nerve damage S1/L5, Fibromyalgia, DJD, no cartilage left in either knee, etc, etc.) Years ago when my former doctor (he moved to another state-miss him a lot, he was compassionate-helps so much just to have someone who give a crap...anyway back to the meds) prescribed Neurontin for me to try, I had high hopes... don't have those anymore, that it would help.  He increased the dosage several times and encouraged me to be patient.  I didn't like the way I felt when I was taking it but couldn't really express why, just made me feel strange.  I realized I was more forgetful than normal but didn't make a connection.  However I did connect the fact that I felt odd, 'disconnected' was the best way i could express the feeling.  Then one day I was driving to my doctor's office-a place I'd been over 200 times in the several years I'd been going to see him, and all of a sudden, I couldn't remember where his office was... I found myself wondering if I'd passed his office. I pulled over and parked in the nearest parking lot, got out of the car, looked up the road, down the road, and honestly could not remember if his office was further up the road or if I'd passed his office.  So I get out my cell phone-feeling like an absolute fool-and call his office.  When the receptionist answers I tell her exactly what's going on.  Thankfully she felt more like a friend than just my doctor's receptionist (you go see a doctor often enough you soon become on first name bases with everyone in the office-or at least I do) anyway, turns out I'm only two blocks away from the office.  I hadn't passed it yet.  Needless to say that was the end of Neurontin for me!  Several years later when Lyrica came out (I was seeing a different doctor by then), I tried it.  Thankfully, I was lucky enough to find another great doctor, and he had actually read my medical history and warned me ahead of time I MIGHT have similar side-effects to those of Neurontin. We started with a low dosage and he was correct, I started feeling the same strange disonnected feeling, my thinking become 'fuzzy', and with the Lyrica I also felt irritable.  Of course I stopped taking it also. 

       

      I do know a couple of people Lyrica helped them with their fibromyalgia and neurontin helped my husband tremendoussly when he had Ramsey Hunt and he takes it to help with his diabetic neuropathy and they haven't experienced any of the weird side-effects i did.  I tell you that to say, everyone is different. Lyrica may be a blessing to you, Neurontin may be a blessing for you.  If your doctor thinks it might help, try it.  

       

      I'm planning now on contacting a doctor about the implanted spinal cord stimulator.  I have a net friend in WV who tried it and is having the actual implant done the 14th of this month.  I'm hoping!  I know it won't help with the my knee pain or probably the fibromyalgia,  but if it will help with my low back pain, leg and foot pain....WONDERFUL!!! 

  • Anonymous
    rather not say
    Feb. 13, 2008

    as the subject line says..........i am BRAND NEW to this forum.

    ive read a lot and one of the main reasons for my concern is this-the pain management dr. im using has tried lyrica, which did nothing but add 30 lbs and lortab #5, a grand total of trying TWO different drug combinations before he told me he wants to do a spinal cord implant. surgery #27 in less...

    RHMLucky777

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    as the subject line says..........i am BRAND NEW to this forum.

    ive read a lot and one of the main reasons for my concern is this-the pain management dr. im using has tried lyrica, which did nothing but add 30 lbs and lortab #5, a grand total of trying TWO different drug combinations before he told me he wants to do a spinal cord implant. surgery #27 in less than 6 years just took place last wednesday on my foot, so i am familiar with all of the family of pain pills. he keeps telling me "you told me that narcotics dont work on you" which is what i told him when i first saw him-MEANING that they dont work because i hadnt had any in months, so no they hadnt been working.  Im getting these subtle hints from this dr. that if I dont do the implant and put many thousands of dollars in his pocket that he will drop me as a patient and with the bad and uncomfortable things ive read im pretty scared of doing this and am wondering if anyone has ever had or heard of a dr that has, in so many words, threatened a patient to with no more treatment unless they had this implant done?  I was told that he would not keep me on pain meds indefinately even though i see people with BAGS of pain meds every time I go in there. Im really confused on this one and what to do if he tells me he will no longer treat me.  Any suggestions?

    Thanks! 

    • BrentO
      Mar. 10, 2008

      Everything here sounds so familiar, my problem is from failed back surgery from 7 years ago (L5-S1), developed scar tissue pressing on the nerves. Went thru all of the conservative treatments, including 10+ epidural injections. Wound up finding my pain management clinic & Dr. a year ago, learned about the SCS last August. I had the trial in January, then...

      RHMLucky777

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      Everything here sounds so familiar, my problem is from failed back surgery from 7 years ago (L5-S1), developed scar tissue pressing on the nerves. Went thru all of the conservative treatments, including 10+ epidural injections. Wound up finding my pain management clinic & Dr. a year ago, learned about the SCS last August. I had the trial in January, then the permanent implant was done on Feb 13th. 

       

      For me, it works great, I have coverage from the lower ribcage all the way down to my toes. I'm still on my pain meds, but at about 1/3 the dosage, and working to taper off completely to see how that leaves me. 

       

      I completely agree with the person who said there is no comparison between the SCS & TENS, I tried TENS, and found it to be a little amusing, to momentarily distract me from the pain. Not knocking it if that works for you, but still, no comparison. 

       

      I have two wire leads in my spine, with 8 contacts, making 16 total contacts. I don't have much discomfort in my back where the leads were put in, but do have some discomfort in my abs (my IPG is located just above my belly button,to the left), this is getting better each day though.

       

      I look forward to getting away from the drug-fog, and would encourage anyone who is considering the SCS to check it out further. Surf the web for Medtronic, Boston Scientific, & ANS (the 3 main US makers of SCS units), can also check out www.raceagainstpain.com to find several people who have an SCS. You can "try before you buy", by having the trial, which is for 2-10 days, and lets you know if it works for you.

       

      BrentO 

  • Bill
    Jan. 14, 2008

    Hi Mear, I went through the ringer with 4 back surgeries, the last fusion in 2001 and never found adequate pain relief.  Two thoughts.

    1. My nuero surgeon (excellent at Yale) was concerned that after the stimulator was implanted how do you get a good MRI.  I already have rods and screws from fusion.

    2. I had a medtronics morphine pump implanted...

    RHMLucky777

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    Hi Mear, I went through the ringer with 4 back surgeries, the last fusion in 2001 and never found adequate pain relief.  Two thoughts.

    1. My nuero surgeon (excellent at Yale) was concerned that after the stimulator was implanted how do you get a good MRI.  I already have rods and screws from fusion.

    2. I had a medtronics morphine pump implanted in mid-October.  The operation was not as easy as the doctors made it sound but the long term results have been very good (not excellent yet).  I went from 60mg of Oxycontin daily plus Lyrica - a nerve blocker, to now only on the morphine pump.  My daily pain went from living between 3-8 on a scale of 1-10 to now living ZERO-3, sometimes 4 if I overdo it.  I never have that dibilitating pain that I lived with for 8 years through all the, blocks, procedures, surgeries and unsucessful recoveries.  It is a big step to take, I mulled it over for almost a year but it is bringing good results for me.  Check out the medtronics site, they have a good video.  I know some doctors in the MAss general area are doing this, I went to RI hospital because I was referred to a specialist there.

    Can I answer more questions?  Just ask.

    Bill 

    • Anonymous
      twinsdad66
      Jan. 15, 2008

      Bill: I didn't write the "Original Post" but I have been following this thread due to interest and concern for the OP as well as myself. If you've read it all then you saw my comments and know a little about me. I may have questions for you at some point. I'm very tired and I almost forgot to drop in and read today....

      RHMLucky777

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      Bill: I didn't write the "Original Post" but I have been following this thread due to interest and concern for the OP as well as myself. If you've read it all then you saw my comments and know a little about me. I may have questions for you at some point. I'm very tired and I almost forgot to drop in and read today.

       

      Bill, the short answer for your first concern about getting a good MRI afterwards is implanting the SCS is: You don't! An MRI will most likely cause permanent damage to the unit, requiring replacement. That's not to mention the possibility of causing you bodily harm. I don't think I want a magnet pulling on anything attached to my spinal cord. I'm not sure if any of the components are magnetic, but doctors have told me that they've only achieved minimal success with post SCS, MRI's. They've also told me to never get one. The only scenario when I should ever get one, is if I receive a new injury and an MRI is required to know how to proceed with my evaluation and treatment. 

       

      I enjoyed your comments. Having experienced the things I have, (related to my back) I feel a moral obligation to share my knowledge with others in the same situation. It seems you have that also. So, keep posting...and have a gr8 day!

       

      twinsdad66

       

       

       

    • Bill
      Jan. 16, 2008

      Thanks for the feedback.  If a person has multiple issues or operations or still unresolved problems like I have from degenerative disc disease we need to be able to have an MRI for diagnosis of future stuff.

      I have had fusion and have titanium rods & screws but can still have an MRI.  My guess is they compensate for that somehow or the titanium...

      RHMLucky777

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      Thanks for the feedback.  If a person has multiple issues or operations or still unresolved problems like I have from degenerative disc disease we need to be able to have an MRI for diagnosis of future stuff.

      I have had fusion and have titanium rods & screws but can still have an MRI.  My guess is they compensate for that somehow or the titanium isn't an issue for the magnets.

      I'm hoping all who are following this thread from Mear have good doctors to work with.

      peace, Bill

    • Mear
      Jan. 15, 2008

      Hi Bill,

      Thanks for respondingBig Smile.  I am so grateful to all of you who are taking the time to give me such great information.  Bill, I am so happy that you are getting relief from this pain pump.  I will definitely look up the medtronics site and read everything with an open mind.

      Thank you again.

      Mear

    • Bill
      Jan. 16, 2008

      good luck with your decisions Mear.

      I can be reached at ctcubsfan@hotmail.com if you need to get in touch directly.

      peace, Bill

    • Bill
      Jan. 16, 2008

      sorry mear ctcubsfan1@hotmail.com

      I left out the 1 after ctcubsfan.

      Bill

  • haircuttinpro
    Jan. 14, 2008
    HI MY NAME IS CYNTHIA FROM PITTSBURG PA , I WAS THINKING OF HAVING THE SAME THING DONE I HAVE BEEN SUFFERING SO BAD IN PAIN , JUST HAVE NOT FOUND THE RIGHT DOCTOR ,, LET ME KNOW HOW IT GOES , LUV CYNTHIA
    • Mear
      Jan. 15, 2008

      A warm hello to you Cynthia,

      Thank you so much for your prayers.  I will be praying that you find the right doctor.  That is half the battle, isn't it?  We need a good doctor who knows his stuff and yet who has empathy for those of us who suffer with pain on a daily basis.  During one of my recent monthly doctor visits, I became...

      RHMLucky777

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      A warm hello to you Cynthia,

      Thank you so much for your prayers.  I will be praying that you find the right doctor.  That is half the battle, isn't it?  We need a good doctor who knows his stuff and yet who has empathy for those of us who suffer with pain on a daily basis.  During one of my recent monthly doctor visits, I became emotional and teared up.  My doctor said to me, "I bet you loved nursing, didn't you?"  Just knowing that he understands what I am going through.  He knows how much I miss my career.  He understood why I was crying and why I was down that day.  That meant all the difference in the world to me. I hope and pray you find a doctor like I have. 

      HUGS,

      Mear

    • sherry
      Jan. 17, 2008
      I read your post about finding the right doctor. I believe that I have pretty good doctors...some more understanding than others. What irritates me is when some health care professionals say things that insinuate that it's all in your head or make you feel like a drug seeker. I am a nurse also (I think I read that you were, too) and we are trained to treat...
      RHMLucky777
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      I read your post about finding the right doctor. I believe that I have pretty good doctors...some more understanding than others. What irritates me is when some health care professionals say things that insinuate that it's all in your head or make you feel like a drug seeker. I am a nurse also (I think I read that you were, too) and we are trained to treat pt's pain adequately and without judgement but I have witnessed many professionals make snide comments about pt's. I know there are people in my life who don't think my pain is as bad or real as I perceive it, but I am not one to complain openly about my pain and I try not to let it affect my activity so now that I am considering a SCS they think this is overkill or I am exagerating about my pain. To me pain is very exhausting...it occupies your body and mind 24/7. So when I have to defend myself or explain to people why I cannot tolerate some activities I feel even worse. Enough whining...I wanted to ask you if you are a nurse and are you still working. I work in a surgical ICU and love my job. For about 6 yrs doctors have told me I need to find a different job. Last week occupational health told me I need to find a different postion within the next 6-12 months. I am brokenhearted about not working in the ICU. I am a bit of an adreniline junkie and detest the idea of a desk job. Well, enough rambling. Take care and let me know how your appt re: the SCS goes
    • Mear
      Jan. 17, 2008

      Hi Sherry,

      I totally relate to your love of nursing and your not wanting to lose your ability to work.  Yes, I am a registered nurse and loved my job as a psychiatric nurse.  I have been unable to work now for over 8 years and I cannot tell you how much I miss it.  I still keep up my license because I am hoping and praying that someday there...

      RHMLucky777

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      Hi Sherry,

      I totally relate to your love of nursing and your not wanting to lose your ability to work.  Yes, I am a registered nurse and loved my job as a psychiatric nurse.  I have been unable to work now for over 8 years and I cannot tell you how much I miss it.  I still keep up my license because I am hoping and praying that someday there will be a cure for Reflex Sympathetic Dystrophy and I will be able to return to work.

      I will keep you posted on any info I get on the SCS.  Good Luck with your appointment and with your current position in the ICU.

      Hugs,

      Mear 

  • Anonymous
    twinsdad66
    Jan. 13, 2008

    Hello Mear!

     

    I'm very sorry to hear of your condition. I understand, as I too have been down that road; and like the "energizer bunny"......."still going"! Our pain locations, severities and other symptoms will most likely vary from one individual to another. Unfortunately, so will the relief you get from the SCS along...

    RHMLucky777

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    Hello Mear!

     

    I'm very sorry to hear of your condition. I understand, as I too have been down that road; and like the "energizer bunny"......."still going"! Our pain locations, severities and other symptoms will most likely vary from one individual to another. Unfortunately, so will the relief you get from the SCS along with almost all other treatments.

     

    March 04, I had surgery to remove the L5 disk. I had a pinched nerve that was compressed and stretched taut. During the procedure, the surgeon "partially severed the S1 nerve root". (That quote directly from post-op report.) Needless to say, I came out of surgery worse than I went in. I have had nearly every procedure you mentioned, except accupuncture. Nine times I had the Epidural Steroid injections; six before surjery, three after. None helped. The tens unit was a joke as far as pain relief was concerned. I'd just as soon had a cold Pepsi! lol

     

    Moy 05, after everything else failed, medicine was continually increasing, and the hypersensitivity in my leg/foot/toes was enough to drive a person carzy...I had a Medtronics SCS implanted. Before I go any farther let me say this: Comparing this implant to a TENS unit is like comparing apples and furniture. What? That's what I meant to type. They are not alike in any way. I mean no disrespect to those who've made comments saying they're similar. I've used the TENS and I use my SCS 24/7/365. The TENS unit provides skin tingling sensations in the area you choose to place the leads. If you turn it high enough to get muscle relief, it's stinging your skin so badly you can't stand it; and it can't get close to relieving nerve damage. The SCS on the other hand sends electrical pulses through your spinal cord into the specified nerve locations and provide an internal sensations. It kinda feels like you have a foaming seltzer flowing through your legs (in my case). It's not really felt on the skin level or surface, but much deeper. For me, the sensation runs from just below my beltline, to my toes. It gives deep relief that also takes care of most of the hypersensitivity. Before the implant I couldn't stand for the sheets to touch my feet. But it's not all good. I don't really get much help in my low back. I think the doc will tell you that. I can adjust the SCS so high that I can't lift my foot off the floor, (not recommended! lol)  but the range is  just limited. I am happy with my SCS. I wish it gave more relief, but I'm content with what I have. I still have to take meds, but much less than before.

     

    Sept 06, remember that 24/7/365? Well I hit complete battery failure. It was Oct before I could get an appt to get it replaced. The new Stimulator (they replaced everything, including leads and electrodes) has a rechargeable battery. I'm not sure exactly how long a charge lasts, but I chareg it about every 3 weeks. It takes about 3 to 4 hours. I usually just do it when I go to bed and let it charge while I sleep. This one seems to work better than the first one, but I have no idea how long it will last. (many years I pray) It was during the 3 weeks of no SCS that I realized how much it was actually helping. I have a friend who has a unit that is much older,but he only uses his 20 or 30 mins at a time, a few times each day. That won't work for me. I have to have constant relief. I have turned it off by mistake a couple of times without realizing it and in a few minutes the pain level begins to increase.

     

    Miss, I will be happy to write more tomorrow. I'm very tired and sleepy now. I'm hurting too. I'll even give you my yahoo address if you'd like it. From there, I'd give we could exchange #'s (only if you want) and I can tell you more. I offer this, because I had no one. I still only know one person who has one, so it's difficult to get experienced info. Jerry Lewis has one and you can read about it on the net, with just a little searching. His is Medtronics also. One mre thing I will say before I go is that I wish I had tried the pump first. I still might one day. The only problem with that is, the closest do that services the pumps is about 75 miles away. They are few and far between in my area; East TN.

     

    I wish you the best. As I said, Ill try to come back Sunday after church and post a litle more. I hope this has offered some insight rather than confusion. If you remember only one thing from my comment, make it this: SCS is in no way comparable to TENS. Apologies to those who believe otherwise...

     

    Try emailing me at my username, if you like! God bless you! I'm too tired to proofread. I hope I made sense with just a few typo's! lol

    • Mear
      Jan. 13, 2008

      Hello Twinsdad66,

      And a great big thank you for staying up and typing regardless of how tired you were at 2:07 am!!  I hope you slept well last night. I am taking everyone's comments into consideration and you are right, everyone's pain experience is different.  I have an RS stimulator which is alot more advanced than a TENS unit. ...

      RHMLucky777

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      Hello Twinsdad66,

      And a great big thank you for staying up and typing regardless of how tired you were at 2:07 am!!  I hope you slept well last night. I am taking everyone's comments into consideration and you are right, everyone's pain experience is different.  I have an RS stimulator which is alot more advanced than a TENS unit.  It works for 15 minutes on my pain and then the next 30 minutes it works the muscles.  So in that way, I believe I get a lot more relief than if I were using a TENS unit.  I've tried one of those and it was useless.

       So if you had it to do over, you would have tried the morphine pump first? Is that what you are saying?  I'm wondering if that is the route I should consider.  By the way, I have already read the Jerry Lewis story and it left such an impression on me.  He has come such a long way.

      God bless you, your pain journey touched me and I will keep you in my prayers.  Thank you for your kindness in taking the time to write.

      Mear

    • Anonymous
      twinsdad66
      Jan. 13, 2008

      Thanks for the kind & caring words. Our world is one where true understanding comes only from experience. I'm sorry you are able to understand!

       

      I hope some things I write are helpful. As I said last night, it's hard to get information from someone who has a SCS because there never seems to be anyone you know personally that has one. Yes, I...

      RHMLucky777

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      Thanks for the kind & caring words. Our world is one where true understanding comes only from experience. I'm sorry you are able to understand!

       

      I hope some things I write are helpful. As I said last night, it's hard to get information from someone who has a SCS because there never seems to be anyone you know personally that has one. Yes, I probably would rather have tried the Morphine (I call it pain pump) first. It is still an option for me, if I ever need more relief than I'm getting now. The docs just felt that the SCS was a better solution for me because of the certainty of nerve damage and the symptoms that I have. I was taking a large amount of narcotics before. I've really only been able to reduce that in the last 6 months. Your body gets used to them and it feels you must have them, even when pain levels are lower. I take only one medication now. It is an opiate, but the dose isn't terribly high and I'm off all the other muscle relaxers, seizure meds, benzo's and whatever new drugs the reps happened to be pushing that month! lol

       

      I advise you to get more than one professional opinion if at all possible. SCS's are great for those they help. The size of the actual unit is about 3" x 3"...maybe a little smaller. It's about 3/4 of an inch thick. Mine is located in my waistline, about 2 inches above the right rear pocket of my jeans. They can put it in your stomach are also. The doc can give you all those details. Here's something else you need to know. There are many variations of electrodes that they can place in your spine. Some are as simple as a couple of wires and only require a small incision. Others (mine) are called paddle electrodes. They have multiple contacts on each paddle. Mine has 2 paddles with 4 contacts each. That was the most available when I got it. They now have them with up to 32 contacts! WoW! The technology of these things develop about as quickly as home computers! Back to the electrodes: Because of the length of my electrode (and it's placement in my spine) they had to cut off a piece of the T10 vertebra. It was the only way to get it to fit. I don't know if they still have to do that. The incision for the generator (about 4 inches) itself is not too bad. There is some pain and discomfort. It goes away rather quickly. The one for the electrodes is a whole different story. It's about 6 inches down the middle of your spine. It hurts a ton! It remains sensitive to touch (chairs with hard plastic or wooden backs) for several weeks. That is by far the most difficult part of recovering from the surgery. Mine is just at a place in my back where it made it difficult to turn over or sit up in bed for a few days. Be warned! It's gonna hurt! Also keep in mind, if mine stops working tonight, I'll call the doc in the morning to get it replaced. It truly helps! It really comes down to the specific needs of the individual patient. Only you can make the final decision. I'll say this and be done again for the night. If 50% or more of your pain is in your legs or arms, it will probably be helpful. If I only considered the benefit I got for my low back pain, from the SCS, I'd regret it and would NOT do it again.

       

      I'll be watching for more comments. If you have questions, I'll answer them the best I can or just say "I don't know"! You still are welcome to email me. This is a big decision. I'm sorry you're having to make it! I pray that God will guide you in the right direction, and you'll make the best choice! May God bless you!

       

      twinsdad66

       

       

    • Lisa
      May. 28, 2010

      ok, you are saying that it really hurts to get the implant? I am due to recieve the trial implant in a few weeks. I have extreme pain in my left foot and my right knee. This has been going on for 3 years. Now when they attach the wires to my spine the doctor is saying that I should fel a good tingly feeling, You are saying that for a while it hurt alot... Now...

      RHMLucky777

      Read More

      ok, you are saying that it really hurts to get the implant? I am due to recieve the trial implant in a few weeks. I have extreme pain in my left foot and my right knee. This has been going on for 3 years. Now when they attach the wires to my spine the doctor is saying that I should fel a good tingly feeling, You are saying that for a while it hurt alot... Now how long do you have to be careful not to bend or twist, orjust simply move normal? I am not nervous I just would like to go in with information... Thanks the prophet.

  • sherry
    Jan. 12, 2008
    I have an appt on March 10th with my pain doc to discuss a spinal neurostimulator. What I have found on the internet and from people-who-knew-people with one has been about 95% positive. I am tired of living on a pill schedule, too. I have had 4 epidural steroid injections but the relief doesn't last very long. In 2004 a neurosurgeon told me that I would...
    RHMLucky777
    Read More
    I have an appt on March 10th with my pain doc to discuss a spinal neurostimulator. What I have found on the internet and from people-who-knew-people with one has been about 95% positive. I am tired of living on a pill schedule, too. I have had 4 epidural steroid injections but the relief doesn't last very long. In 2004 a neurosurgeon told me that I would eventually need a spinal fusion, but I am trying to avoid that. I would probably have to find a different career if I had a fusion. Good luck to you & let us know how the appt went. Any info I can get about stimulators I would appreciate.
    • Mear
      Jan. 15, 2008

      Hi Sherry,

      Oh, how I can relate to your being tired of the pill schedule.  This was my main reason for wanting to try a neurostimulator.  But after talking to so many people, my mind has opened up to other options.  I don't want to jump into anything, especially where surgery is involved.  I would love it if I didn't have to have...

      RHMLucky777

      Read More

      Hi Sherry,

      Oh, how I can relate to your being tired of the pill schedule.  This was my main reason for wanting to try a neurostimulator.  But after talking to so many people, my mind has opened up to other options.  I don't want to jump into anything, especially where surgery is involved.  I would love it if I didn't have to have surgery at all and I could come off all my meds.  But I know at this point that is not possible.  I will keep you "posted".  God bless and may you find the answers you are searching for. 

      Mear

    • Nicolemm
      Apr. 30, 2011
      I had the trial stun done 1 month ago and had the first 2 pain free days ever in the last 6 yrs after my accident. I just had the permanent one installed and can't wait to use it I have to wait 2 weeks to turn it on. The procedure was a little rough the first 4 days but each day gets better. Good luck to you all I hope this helps
    • sherry
      Apr. 30, 2011

      I'm very happy to hear that so far yours has been a success. I'm still unsure about the whole thing. The doctor that I was seeing told me that I would have to be off of all narcotics for 3 months before he would do it. I laughed and said, "if I could stand to be off of the meds for 3 months I really don't think I need the neuro stimulator." So far the meds...

      RHMLucky777

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      I'm very happy to hear that so far yours has been a success. I'm still unsure about the whole thing. The doctor that I was seeing told me that I would have to be off of all narcotics for 3 months before he would do it. I laughed and said, "if I could stand to be off of the meds for 3 months I really don't think I need the neuro stimulator." So far the meds are holding me, but I really don't want to be on this junk for the rest of my life. The surgeon that I seen last December told me that if he did surgery on me he would fuse me from T3-S1. Pretty much my whole spine. I feel like I'm getting between the proverbial rock & hard place. Good luck in you journey. I really do hope it works out well for you.

    • Nicolemm
      May. 01, 2011
      My dr didn't have me stop taking my meds at all. Actually I was told to take them with the trial just try to take less or even if I take the same at least try to do more active things that I couldn't normally do. If I had to go 3 months without pain meds to get the stim I wouldn't have done it. I have had episodes that mimic a heart attack whenmy pain has gotten...
      RHMLucky777
      Read More
      My dr didn't have me stop taking my meds at all. Actually I was told to take them with the trial just try to take less or even if I take the same at least try to do more active things that I couldn't normally do. If I had to go 3 months without pain meds to get the stim I wouldn't have done it. I have had episodes that mimic a heart attack whenmy pain has gotten severe that make me pass out I was told it's dangerous because the change in blood pressure can cause a stroke. Passing out was my body protecting itself from the stroke. I'm 32 and have tried everything from mess epidurals of all kinds back surgery therapy and haven't had any success so I'm keeping my fingers crossed that this stim works a's well a's the trial
    • sherry
      May. 01, 2011

      YEah, I just laughed when they told me that I had to be narcotic free for 3 months before getting a neurostim. I was told that the narcotics bind to receptors on the cell and if the cell's receptors were full then the stimulator wouldn't work as well. I told them the way I see it is....if you hit me in the head with a hammer for 3 months when you stop I'm gonna...

      RHMLucky777

      Read More

      YEah, I just laughed when they told me that I had to be narcotic free for 3 months before getting a neurostim. I was told that the narcotics bind to receptors on the cell and if the cell's receptors were full then the stimulator wouldn't work as well. I told them the way I see it is....if you hit me in the head with a hammer for 3 months when you stop I'm gonna tell you that it feels better! It's interesting that you said you didn't have to stop taking your meds at all and yours seems to have been successful. I was told that it wouldn't work if I didn't stop taking my meds. Please keep me updated on your progress. I hope you continue to have success and prove my doctor wrong at the same time! Good luck.

       

    • Nicolemm
      May. 01, 2011
      It's strange how dr's all have their own rules with these things. My dr has been implanting these with a 90% success rate. He's great. I actually have a girl from my husbands company using him now. I go in on tuesday and will ask him why a dr would aak you to stop taking meds. I stopped taking mine during my pregnancy to make sure 100% the baby wouldn't have...
      RHMLucky777
      Read More
      It's strange how dr's all have their own rules with these things. My dr has been implanting these with a 90% success rate. He's great. I actually have a girl from my husbands company using him now. I go in on tuesday and will ask him why a dr would aak you to stop taking meds. I stopped taking mine during my pregnancy to make sure 100% the baby wouldn't have any complications and I had to live off a heating pad. Which caused burns on my back that last months. It looked a's if my outer layer of skin was discolored. I hope you find something that works for you. I'm sure a stim isnt for everyone but it sucks you can't even try it to see if it would be your answer
    • sherry
      May. 01, 2011

      Let me know what your doctor says about the "narcotic vacation". I think my doc just does this to artifically inflate his success rate. Good luck!

    • Nicolemm
      May. 01, 2011
      Hahaha good point I will get back to you and let you know what he says for sure. And thanks!
  • Mattsmon
    Jan. 12, 2008

    You are wise to explore all your options while you can.  I can almost feel your pain myself, you poor thing. 

     

    The morphine pump is inserted into your stomach cavity---(of course that is where MINE is because of the location of pain--yours might be different). Mine is 5 years old and therefore an older model.  The wires are woven through...

    RHMLucky777

    Read More

    You are wise to explore all your options while you can.  I can almost feel your pain myself, you poor thing. 

     

    The morphine pump is inserted into your stomach cavity---(of course that is where MINE is because of the location of pain--yours might be different). Mine is 5 years old and therefore an older model.  The wires are woven through your spinal cord and the medication is fed into your body that way.  There is NOTHING outside of your body at all.  There is a small pooch on the right side of my stomach, but that's it.  The older ones are about the size of a hockey puck, but yours would be a newer model which is much smaller (so I am told) and your refills would be much less frequent than mine as the new pumps hold more.  The great thing about them is that you can have a combination of all kinds of meds in there.....not just narcotics, but whatever is specific to YOU and YOUR pain.  Also, if the pharmacies start reverting to NOT carrying the narcotics that we so deperately need, it will not affect you at all because your medication (the chance of abusing it) is not under your control.  I say that and that is how my pump works (I do still take Dilaudid, but only 8 mg. every 3 days!), however, with the pump you can get what is called a "bolis" (sp?) that will give you an extra burst of medication at more stressful times, or at times when your activity levels increase (work or holidays or dealing with your mother--ha-ha!!) and that CAN be under your control.  There are a lot of pluses with a pump.  My battery is good for 5-7 years and that depends on the amount of medication that goes through it.  Aparently mine is on the higher side, so I expect that it will be sometime this year that it will need to be replaced.  It is a very simple day surgery---my refills are once every 50 days---yours would be less.  It does not hurt AT ALL.  They just stick a needle full into the spot where the pump is and it does not cause anything more than say, a pinprick.  I am not trying to talk you into anything here, I just have shared the pain and the "journey" through all the doctors (85% who don't know what pain relief is or HOW TO ACHIEVE IT!) and hate to see someone have to continue to struggle.  If the stimulator works for you, that will be wonderful!

    I hope you are feeling much better!

    Matt'smom

  • Mattsmon
    Jan. 11, 2008

    I'm glad someone responded who has had the more advanced stimulator implanted and I do not profess to be an expert in the kind of pain either of you have, but I do know that my pain from all the low back laminectomies and the initial tumor was at the point of despair by the time I found my way to the morphine pump.  Although mine is at a different...

    RHMLucky777

    Read More

    I'm glad someone responded who has had the more advanced stimulator implanted and I do not profess to be an expert in the kind of pain either of you have, but I do know that my pain from all the low back laminectomies and the initial tumor was at the point of despair by the time I found my way to the morphine pump.  Although mine is at a different location, and I continued with a very stressful job on a daily basis, the pain was enough that I felt I would have lost my mind and battle with chronic pain if there wasn't something else I could do. (I, too, have been down the "injection" road and on the very heavy duty drugs on the way.)  While I am glad to hear that the new stimulator seems to be working (very early yet as you will admit) for that person, I think people have a real misunderstanding when you use the word "morphine"  pump.  Compared to the amount of medication I was on, the amount that travels through the pump directly into my spine is a small FRACTION of the oral meds.  I know there are many people who want to be off medication and while that is an admirable goal, for a lot of chronic pain sufferers, it is not a realistic goal.  Very few people know I have a pump and when it is necessary to tell, most people are genuinely surprised. They have the misguided notion that anyone on a daily dose of morphine must not be coherent and that the morphine affects every and all pain.  Believe me, it only provides the back pain relief and does nothing for a bad headache!  Truthfully, (for me, after everything I have been through, like all of you ) if I had something installed in my body that was only 30 percent effective, I would feel cheated.  I hope for that individual, the stimulator will take them to a much higher level of relief as they have it for a longer period.

     

    It sounds as if you have been through hell and back, and I truly do hope that when you recover from the flu, you are able to keep your appointment.  You may also want to ask the neurosurgeon about a pain pump with meds in it while he is telling you about the stimulator---I promise you that again, compared to oral medication, it is a small, small amount that provides the same relief.....After all you have been through, it seems to me you owe it to yourself to feel the best you can, and when I say that I don't mean anything against the person with the new stimulator---we are all different in our perception and reception to pain.  God Bless all of us!

    Matt'smom

    (PS  I am also from MA. and miss it like crazy!)

    • Mear
      Jan. 12, 2008

      Hi again Matt'smom,

      Thank you again for your kind concern.  I will definitely talk to the neuro-surgeon about a morphine pump as well because I do realize that that alone would be a jump down in medication for me.  I know that it is only a fraction of what you need orally.  I am sitting here now with my "TENS unit" ( mine...

      RHMLucky777

      Read More

      Hi again Matt'smom,

      Thank you again for your kind concern.  I will definitely talk to the neuro-surgeon about a morphine pump as well because I do realize that that alone would be a jump down in medication for me.  I know that it is only a fraction of what you need orally.  I am sitting here now with my "TENS unit" ( mine is called RS stimulator) and I took my slow release narcotic, along with my other medications at 5am.  I still am feeling a great amount of pain.  I cannot imagine just the stimulator with no medication.  As far as the morphine pump, what is outside of your body?  Is it cumbersome? How often do they have to change batteries?  I want to explore every option before having any surgery.

      Thanks and have a Big Grin day!!

      Mear  

    • J McCune
      Nov. 01, 2010

      To: Matts Mom

           In 2003 I had the pump put in. Matter of fact it was my second one. A little over a year ago I was notified by the Medtronic Co. to have it removed. The catherer was causing some patients to get growths at the end of it and it was dangerous. My pain in in the lower spine, which I have had three surgeries for. I don't recommend...

      RHMLucky777

      Read More

      To: Matts Mom

           In 2003 I had the pump put in. Matter of fact it was my second one. A little over a year ago I was notified by the Medtronic Co. to have it removed. The catherer was causing some patients to get growths at the end of it and it was dangerous. My pain in in the lower spine, which I have had three surgeries for. I don't recommend it at all. They put clomdine, Demarol, and then morphine in mine, none of which worked. I had a bone fusion done, they took a bone from my hip and fused it into the lower spine, which didn't work either. My problem is finding a doctor to take it out.I live forty-two miles north of Charleston, WV. and eighty-five miles south from Ruby Memorial Hospital in Morgantown, WV. The doctor from Ruby has since left and it is difficult getting someone to take it out.The battery in it has been dead for four years and I never had any benefit from the pump. I'm just afraid of the damage they told me it could do. I feel like i'm living in limbo. The doctors sure like to experiment on everyone, but when it comes for removal, they don't want to hear about it. I wish everyone who have a pump in them the best of luck, because I sure haven't had any.

       

                                                            Stuck in limbo,  11-01-10

  • RisnShine
    Jan. 11, 2008

    Hello!  I hope to shed a little light for you on the SCS as i just had one implanted on Mon, 1/7; an Advanced Bionics/Boston Scientific device.  Obviously it will be while to be able to assess the exact benefit for me, but here's what I know and hope it can help you assess your situation.  

     

    I began this journey in Mar 2000, the EMG...

    RHMLucky777

    Read More

    Hello!  I hope to shed a little light for you on the SCS as i just had one implanted on Mon, 1/7; an Advanced Bionics/Boston Scientific device.  Obviously it will be while to be able to assess the exact benefit for me, but here's what I know and hope it can help you assess your situation.  

     

    I began this journey in Mar 2000, the EMG showed a scarred dorsal nerve root from my 2nd laminectomy and began care with my most amazing Pain Specialist.  In 2001 I had a trial version SCS implanted that was made by Medtronics.  I actually had extra leads implanted but still could not feel the sensation in my foot/toes where my the pain is most extreme  Therefore, we elected NOT to install the permanent version in 01.

     

    Since then, I have tried everything, from injections to meds to radiofrequency.  I am a proclaimed non-medicine taker, but finally succombed to the fentanyl patch.  It gave some minor relief with less side effects due to the constant delivery.  Twice I went off the patch just in order to try new things.  

     

    The last time I went off the fentanyl patch, my Doc said there was another company who had a more sophisticated SCS device.  So in October, I did the trial version for 1 week and now the permanent one.  The sensation is different, but it also has a much broader reach.  Whereas I cannot feel the sensation in my foot/toes and some of the leg, it was explained that this was from nerve damage...but I know the sensation is there because I get sensations all around the damaged area.  

     

    This is not 100% relief and I do not believe you should expect this.   After 8 years, I just wanted something that did not have side effects that drugs allow.  For me, to have my brain back is more important than 100% or even 50% relief.  The studies show most people get 50% relief from SCS and I am not sure I'll be in that range as my pain grows in relation to my activity, but I think 30% is reasonable and I will be very happy with that!

     

    I am very high on the Advanced Bionics system and the company reps, but I'm sure your Dr. can provide info on all options.  

     

     The Advance Bionics website is www.raceagainstpain.org and will supply good information.  Best of luck to you!

     

    • Mear
      Jan. 11, 2008

      Hi RisnShine,

      Great Name!!  Thank you for the information.  It's so good to hear from someone who just had one implanted.  I will check out that website. 

      Thank you again.

      Mear

  • Mattsmon
    Jan. 11, 2008

    I wish you all the best with this experience.  Since you did not share your "pain journey" I am not sure what the source of your pain is, or where it is located.  I have been on the journey for 14 years now and have pretty much tried it all from the heavy duty meds to the TENS unit, so I consider myself an expert.  My pain is from a...

    RHMLucky777

    Read More

    I wish you all the best with this experience.  Since you did not share your "pain journey" I am not sure what the source of your pain is, or where it is located.  I have been on the journey for 14 years now and have pretty much tried it all from the heavy duty meds to the TENS unit, so I consider myself an expert.  My pain is from a rare tumor in my spinal cord which was (Thank God) benign and removed 14 years ago.  However, the pain never went away and the neurosurgeon kept doing surgery after surgery (fusions, cages which collapsed, etc.)  to no avail, relief-wise.  After some pretty frustrating and terrible experiences to obtain ANY relief, I was finally fortunate enough to have a morphine pump inserted into my spinal cord, with a FRACTION of the medication I was taking, pumping meds directly into the source of pain consistently throughout the day and night.  That was five years ago and today I take a minimum amount of oral meds.  If I was you, and again, I'm not sure what the source or location or degree of pain is for you, if you have NOT tried a TENS unit yet, do that before you attempt any implantation device.  You may already know all of this, and forgive me if you are beyond this stage already, but the TENS unit is a device that you wear on your body and it has lead wires which cause an electrical current to be transmitted throughout your location of pain---to me, it was actually just a different kind of nuisance--almost an irritation to take your mind off the pain.  I'm afraid to say that it did not help me AT ALL( and back then you had to pay out of pocket for it---$800.00!!)   I currently go to a female anesthesiologist who implants quite a number of stimulators, as well as pain pumps.  I'm not sure what the protocol is for stimulator implantation, but prior to having a morphine pump (and I use the word "morphine" loosely---they can put all kinds of drugs in there, as well) it is now encouraged for the patient to see a psychiatrist first and then you go through a "trial" with the pump, generally a one or two day stay in the hospital to see how it does for you.  After it is put in it takes a number of office visits to regulate what meds and dosages are good for that person.  I  wish you well and I pray that the stimulator does the job for you---I will tell you that for most of the population that I see it does NOT provide a level of relief that the narcotics do.  That's just being honest and you asked for honesty.  I'm sure your physician will do a "trial" with the stimulator to see if it is what you need.  I would still encourage you to try the TENS if you have not, as that's exactly what it will feel like, only internally instead of externally.  BEST OF LUCK TO YOU !!  I hope you hear from people whose experiences have been great.

    Matt'smom

    • Mear
      Jan. 11, 2008

      Hi Matt'smom,

      Thank you so much for responding.  I have reflex sympathetic dystrophy.  It is due to a brachial plexus injury that occurred over 8 years ago.  Since then, I live with daily nonstop, burning pain in my scapulas, right shoulder,neck,right arm and right hand.  My circulation is very poor, causing numbness and tingling...

      RHMLucky777

      Read More

      Hi Matt'smom,

      Thank you so much for responding.  I have reflex sympathetic dystrophy.  It is due to a brachial plexus injury that occurred over 8 years ago.  Since then, I live with daily nonstop, burning pain in my scapulas, right shoulder,neck,right arm and right hand.  My circulation is very poor, causing numbness and tingling in my hands and feet.  I have been to pain clinics,receiving every kind of injection you can imagine: stellate ganglion blocks, epidurals, trigger point injections, etc.etc.etc. I've been through physical therapy, occupational therapy, accupuncture, massage, chiropractor, RS Stimulator(which is similar to a TENS unit but more advanced), Lidocaine patches and I am on a medication regimen including pain medication.  I use my RS Stimulator almost everyday and it does help take my mind off the pain. 

      Unfortunatley, I had to cancel the appointment at Mass General to discuss the spinal cord stimulator.  I have had a terrible flu for over a week now and just could not make it.  I am still waiting for the secretary to call me back to reschedule the appointment.  I am glad you told me that the stimulator feels the same as a TENS unit  I have an idea now what to expect.  I'll keep you posted and thank you for your input.

       

    • Anonymous
      Carries sister ...
      Jul. 06, 2009

      My sister-in-law has just gotten the  pump installed in May.  Since then she has behaved as if she has had a nervous break-down.  She is currently seeing a Dr. who intalled and fixed the installation 3x in RI hospital.  I feel that he has made a HUGE mistake with the install and there is no fixing her behavior ( outbursts, screaming and...

      RHMLucky777

      Read More

      My sister-in-law has just gotten the  pump installed in May.  Since then she has behaved as if she has had a nervous break-down.  She is currently seeing a Dr. who intalled and fixed the installation 3x in RI hospital.  I feel that he has made a HUGE mistake with the install and there is no fixing her behavior ( outbursts, screaming and beliving fantsy vs. reality) Does anyone have a suggestion of another Dr. ? ?????  Please HELP !!!  I don;t want to disclose her Dr. name at this time.

       

      This woman is the sister I never had and I hate to see her like this.  Our family is a mess and the only direction that we have turned to time and time again over the past 2mths is RI hospital.  She has been in and out for a total of 24 days and she is also being given some heavy meds. 

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