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4 Spinal Surgeries & now looking at a SCS

donnalee.bddonnalee.b Posts: 12
edited 06/11/2012 - 9:02 AM in Spinal Cord Stimulation
Hi Everyone,

4 Spinal Surgeries & now looking at a Spinal Column Stimulator.

I have been reading this forum for years now and have finally decided to post something on the forum, hoping for some more information/light.

This was all caused from a Motor Accident.

In the space of almost 5 years starting from May 2009 until today as I type this, I have had 4 spinal surgeries, First being a laminectomy to fix a disc protrusion which has also been pushing on my spinal nerves, this then failed and exploded, at Level L4/L5 I was advised at this point that the nerves had been even further damaged and that L5/S1 was showing the same signs of exploding. I had a double TLIF Fusion of both L4/L5 L5/S1 using screws/rods. Next it was part of the bone had broken away and I was to have the hardware removed as the scans had shown that 1 of the screws had been hitting the spinal nerves. During the removal my Neurosurgeon had removed all scar tissue (due to this also attacking the nerves) put a protective coating over the spinal cord at that level, and scraped down the nerves. During this my Dura was accidently cut. But was fixed during the surgery. this was April 2011.

6-8 weeks after this surgery I was going down hill really fast. And then got a fine Cut CT done, it had shown that the spine was broken at the L4/L5 and at that stage I was waiting to get to see my Pain Specialist to go over my medications, but the pain was getting worse so by Oct 2011 I was back in again, but this time they went through my stomach - due to the scaring which was now also doing the same as before. I now have Plates/screws holding everything in place. I felt really good after this surgery and was pleased that things had finally started going my way.
But the good old nerves had other ideas still (even though my surgeon had told me the nerves are badly damaged and it will not fix the pain that I have there) I was hopeful that with more walking and slowing increase the exercise that things would loosen up with time.

Here we are now almost 6 months later and the nerves are sending shooting pains down my legs (both) it use to be just the left leg but now its both. I have numbness in parts of my left leg, spasms, tingling, throbbing, stabbing, and now after the surgeons going through the abdomen I have burning in the right foot and some pretty full on pain in the tail bone and bum cheeks that shoot down my legs.

They are now talking SCS and i have been trying to do as much research as I possible can as I really dont want to keep going into hospital. (I am on Naproxen, and have been on Gabapentin for almost 4 years and have just been changed to Lyrica) And other pain medication to take during the day. I have heard of 3 SCS - St Jude, Boston & Medtronics. I would ideally love to hear from people who have similar issues as myself who have had good and even bad results and which SCS they are using and why.

Please I hope you can lead mean in a direction that will help me decide which one to go for.

I am located in Queensland Australia and have only spoken to 2 other people - but they are using them for something totally different to my requirements.

Please send me a private message also if you wish.

Thanks Everyone


  • Hi Donna. I'm so sorry for everything that you have been through. I also have this lovely condition called nerve damage. Mine is at the L4, L5, and S1 levels. I'm fused from L4 to S1. I've only had 3 back surgeries plus my spinal cord stimulator implant. I wasn't given a choice of which stimulator I wanted, my doctor chose it for me. He does the three main ones, but decided on the Medtronic for whatever reason. I don't have a lot of back pain anymore but the nerves in my legs drive me up a wall. My stimulator covers half of my pain and my prescriptions get a little more and the rest is just there.

    I would be more than happy to answer any questions you may have. Feel free to PM me.

  • Sorry you had so much complications during and after surgery,
    I had l4l5 artificial disc replacement that comprimised the nerve and left me with nerve damage shooting down the left leg,

    2nd surgery they fused the adr in place thinking nerve might heal but in 8 years it has not healed,

    I finaly give in and had the scs implanted, Dr was talking about going with the St jude unit but ended up going wiith the medtronic unit,

    The regular pain i get in both legs i guess is helped a litle with the scs but as the severe nerve pain flares up shooting down the left leg the scs cant seem to control that,

    Actualy to some degree the scs at 1 st seems to help it but as it increases the scs after a while agrivates it to where i just shut it off for a day, This is why i am starting to understand why it works on some people and some dont get full releif with it or not even close to geting the releif they need,

    Some people swear by it as some are having it removed, Once you have serious nerve damage there is no total fix it seems for it, Its very hard to manage it with anything they have for it but anything that makes it a litle easier to deal with it its worth a shot,

    It might take away some of the symptoms to make it easier to target the other symptoms with medicarions but its not a cure by any means to everyone,

    Best of luck,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Hi I have Boston Scienific What I like most about it is charging system. You don't have to sit around to charge it. I to have nerve damage It does help with aid of my med. But just remerber It Isn't a cure.

  • Hi Donna,
    I just had my permanent scs implanted last week and I'm very happy with it. I have cervical nerve damage and 2 prior cervical fusion surgeries. Pain is in my arms and hands. I have the Boston Scientific Precision stimulator. So far, it's taken away about 50% of pain along with the "I don't want to live anymore" feelings.

    Good luck to you! Let me know if you'd like more info.
  • Hi Donna! Sorry about all that you are going through. I have had the trial run on the Boston Pacific SCS a couple of weeks ago and was really impressed. I see my surgeon on Monday to schedule the permanent implant. After the temp was removed it seems as though my pain has returned twice as bad :''( Maybe it seemed as though because my tolerance level was really high before and I kinda started all over with it! I had a fusion almost 4 years ago- L3,4, and 5. Degenerative disc disease as well. only 44 at that time. I, personally, cannot tolerate any pain meds. I only take OTC meds because the prescribed drugs make me extremely sick. I have tried them all and none works with my system therefore the SCS seems as though the only way out for me. I am looking forward to getting it back and being able to sleep at night with no pain. I think that you should at least do the trial to see if it works for you.. I pray that it does!!! Hope this helped and best wishes!!!!! :)))
  • I tried the SCS a few years back but it did not work for me. They do not work for everyone. All it did for me was tingle on top of my pain!! Not a good feeling at all Donna. The SCS is considered a success if it reduces your pain by 50%. If your pain is reduced for less than 50% they advise you not to have the permanent implant. It did not reduce my pain any!!
    Actually I now consider myself very fortunate that the SCS did not work for me. I did not feel that way at first!! Had the SCS worked for me I would have had the permanent implant instead of the pain pump implant I now have. With the SCS I would still have been in pain but with my pain pump I am almost free of all the brutal pain I was in. The only time I have to take any oral pain meds is when I am having a flare up!! No one gets completely free of pain with the SCS. With a pain pump inplant you do!!
    If you would like to know more please PM me.
    Patsy W
  • Patsy sorry but thats somewhat of a false statement, You cant say the scs cant give 100% releif but the pain pump can! If the pain pump could take away all the pain then you would not be taking oral meds at all,

    You say you are fortunate that the scs did not work for you? How the heck does that make any sense? If the scs would of worked then you would not need a lifetime of refills of heavy meds to refill the pump that goes direct in to the spinal fluid,

    The bottom line is the pain pump is more invasive then the scs and thats why the scs is usualy offered up 1 st before the pain pump, I had trials with both the scs and the pain pump,

    1 is no beter then the other and i would not recomend either untill all options have been used up because its all prety extreme for pain control and only is used when everything has failed,

    There are people who have both the scs and the pain pump as all has failed for them and if the pain pump was to fix and help 100% of the pain then they would not have both the scs and a pain pump,

    There is no way to say what 1 will work best for who, And what 1 will work best will vary person to person,

    You could have few who can manage there pain with the scs so going for the pain pump is an over kill posibly for many,

    This aint about which 1 is beter, Its about what 1 will work best thats least invasive,

    So just to recap your statement about you are fortunate the scs did not work at all is simply crazy lol, Not to mention the expense of lifetime refilling pump by a medical person and body geting use to the high dose of medicarion that person cant get off of vs the scs if anyone was to get beter in time the scs can be just kept off and not in use even if its never removed,

    So lets not kid ourself this is all some serious stuff and it was mostly for cancer patients at 1 st and now used for chronic back or spine pain as well,

    I finaly decided to go with the implant of the scs after 3 trials but i aint selling anyone on either the pump or the scs, They are both extreme and when the time comes for each person they will have the trial as everyone else has and they will decide how it works for them and if its worth it,

    Even if its not 50% releif but only 30% releif and other 70% has to be managed with meds is worth it if it can finaly be managed in my opinion vs if pain could not be controled before,

    But the system is set up for a reason to do trial with the least invasive procedure 1 st,

    You cant put the most invasive procedure before the least invasive procedure if not needed, Just as you dont do a fusion if only a micro d is needed,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Patsy,

    I'm confused with your post that you were fortunate that the SCS did not work for you. Based on what you said in your A Wonderful Doctor... thread, you were very happy with the results of stimulator. I would kill for the results that you got:

    The stimulator is working great and coverage is very good.
    It has reduced my leg pain by 100% and the pain in my feet by 60%. Isn't that wonderful? I am so happy with it. I can accidently brush against something with my legs and I no longer scream and jump with the sudden pain!!
    Can we expect you to give up on the pain pump like you did the stimulator if you manage to convince your doctor that the next best thing is for you because the pump doesn't work anymore? With nerve damage, its difficult to achieve pain free.
  • Has anyone ever had to have their Spinal Cord Stimulator removed due to a malfunction?

    I am currently thinking about having the surgery and am having second thoughts based on the potential side effects as described by a Second Opinion Doctor.

    I would appreciate anyone's insight and experience with this surgery as I am very nervous and apprehensive. I have already had spinal surgery and am still experiencing pain and discomfort even with injectible and oral medications.

    Also, what diagnostic tools are left available if an MRI is no longer possible?

    Any help in this would be greatly appreciated.

    Thank You!
  • Hi,
    You should have started your own post, as I am trying to found out people who have the same or similar problems/surgeries as myself.

    I am after info on the brands people are using to see which why I would go as I have 3 choices of SCS
  • Ok childten, Lets not fight over who,s post this is lol. Everyone get back in your corners and come out with your hands up! Defend yourself at all times, No hiting bellow the belt!

    The topic is scs and thats all that matters! I dont think we can recomend what brand anyone should go with just as we cant recomend what meds to take,

    I only know of 2 brands thats out there, st jude and the medronic. The st jude does come with flat leads if needed and the medronic only uses the regular leads,

    I know this because before my implant we was going to use the flat leads and when trial came up st jude rep could not make so medronic rep showed up so we ended up just going with medronic unit,

    I questioned about why we are not using flat leads as we agreed upon and i was told thats because medronic dont use them,

    Let your dr decide what brand he feels you should go with, After all he is the one working with the reps in his office day to day and in surgery,

    The concept behind both units is the same so i would not realy care what 1 is used as long as leads were placed correctly and its working to reduce pain,

    The target is= less pain and hopefully less meds,
    Once you can achive = less pain and less meds= More sex and more activity along with it,
    Did i mention more sex? Just making sure! Git-ir-done
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Thanks for your comment Alex.

    By the way you did mention sex! I have been advised that both Metronics and st Jude us either straight leads or paddles.

    I am mainly interest in the newer technology to make sure that they can both be charged whilst walking around and that they adjust to the positions (auto adjusting when laying down to walking)

    My neurosurgeon talks about st Jude but my pain specialist also said Boston scientific or Metronics.

    I go for my psychologist evaluation next Tuesday then it will be booking in for the trial run. Oh did I mention I will get a tattoo before all of this lol
  • Just wait untill they implant the scs in your ass and have a tatoo of the scs on the outside on the ass. Lol.

    Need to find a tatoo artist who can tatoo= I Survived Spine Surgery!
    Or Become the spine health bikers club and have a tatoo saying= Spine Health Outlaws!
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Alex
    I was going to make my long scar on my back into one big zipper lol but the I thought of it saying I was back stabbed, but now I hAve the new wonderful addition scar on the stomach. So I told my surgeon he should just tattoo his name saying dr ----- was here and the years.
  • Hey you might consider delaying your tattoo or at least ask your doc about it first. Since your body has to focus on healing the tattoo, it may diminish its ability to fight off infection from the implant or temporary leads.

    All the neurostimulator manufacturers make paddle or "flat" leads as well as the percutaneous leads that are inserted without laminotomy. Doctors are tasked to chose the system they feel will best meet your specific pain management requirements.

  • I have scar front and back also and thought about covering it up with tatoo but figured why bother. I can just make up a story how i got it fighting a shark, or how i fought off a biker gang to save a woman, A diferent story for every day, Just make it up as i go along,

    Haglandc, Not sure why i was told medronic dont use flat leads then before my implant, But thats what the dr said, Unless they just did not have the flat one on hand and thats why they told me that who knows,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Thanks for your post about the tattoo haglandc the thought hadn't entered my mine about the infection side.

    But I was planning on get the tat within the next week and i beleive it takes about a week of healing. At rate my doctors / specialists take the Scs trial will take till the end of may that should be enough time don't you think?

    I am going the leads with mine as my surgeon doesn't want me to have to go back through a surgery if the leads move. He has said the st Jude and I am still waiting on the rep to ring me.

    Alex, I have thought the same thing about a story for the scars, I was at a water park (being a site supervisor as I can't go on any rides) and a stranger asks me "how did you get the big scar on your back" I said I was stabbed, the person face was priceless but I really felt like saying "it's none of your bloody business and gee thanks for rememinding me about it again"

    I really hate what I have gone through and how it has changed me, it's effected the things I love (running, swimming, playing with my son, my relationship etc) I wish i could see the boy who caused the car accident and just let him know what he has done to me physically and emotionally, and money I get from this will never be enough.

    Sorry just venting my anger !!
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