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Need advice: SCS and nerve damage

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:25 AM in Pain Management
Hello all! :H It's Angie and Chris.

Had our PM appointment regarding the spinal cord stimulator on Friday. At first they made like they were just going to send the info but when we got home they had called asking if we wanted to set up the psych eval, too.

The unit they will use is ANS and I'm not sure that we have much of a voice in this decision. Unfortunately, in my research today I have found several horror stories on ANS and/or SCS and I was hoping to get more feedback from you all. Has anyone suffered any nerve damage as a result of SCS? Or had any major complications as a result of having the trial or permanent unit implanted? Or has anyone experience the SCS made by ANS?

I want this decision to benefit Chris, not make it worse or more complicated. I know your opinions are just that - your opinions but I would greatly appreciate those who are willing to share their story whether good or bad. We just want to be sure we are making an educated decision.

Thanks to all.

(Here's what I found earlier today: http://counsel.net/chatboards/products_liability/posts.html)
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Comments

  • That is great news that you are getting the go ahead on your SCS!! Congratulations! ">image
    I don't know anything about the ANS system, I have the Precision from Advanced Bionics. It works pretty well for me. The only thing I wish could be different is that I haven't been able to stop taking pain medication. While the SCS has helped give me some pain relief, it hasn't given me enough relief to discontinue pain medication. I was quite worried about this, thinking that my PM doctor would automatically take me off of pain medication because of the implant, but he has monitored my progress after the procedure and has seen that although I do have some pain relief, it isn't enough to stop the medication. I think he is a wonderful doctor! Of course I'm not telling you this to dissuade you from getting the scs, just giving you one person's experience. Even though I didn't receive total pain relief, I feel that the relief it has given me is totally worth going through the procedure and I would definitely do it again!!
    Good luck!!
  • Hi Angie and Chris,
    I got my permanent implant on August 6th this year. A month prior I had the temporary leads for about a week and seemed to help enough to qualify for the insurance part. I did my 30 min. Psyc. evaluation and all was well. For me, which I like to say because “not all results are typical”....I went into the hospital and after being admitted to pre-op I was in my room in 3 hours. I was in a lot of pain around my incisions (mid spine, right hip) but since I never had been cut up before I didn’t know what to expect. My cuts were about 3.5" each. The doctor typically keeps you at the hospital 1 day for evaluation but I stayed an extra day because of high pain, low mobility. It turned out, my surgeon went to his parent’s lake house that evening and his PA guy :/ was left in charge. (Long story) I have not detected any nerve damage or discomfort from this surgery. I do have loss of feeling where my implant is but it's only like 1/8" deep in my skin, so not much room for growth. I think anytime someone gets cut for a surgery you run a risk of nerve damage. I have been massaging my incision areas to help keep the scar tissue to a minimum. Both of you think positive, It will all be OK.. Oh, I have the Medtronics brand.
  • I'm not sure where Spicewood Tx is but I am also a Texan!! It's very cool to see another Texan on board!! Nice to have you here~
  • Thanks to all who responded so far! I totally understand that all comments expressed are from your personal experiences and I appreciate your willness to share. It is very helpful to hear both sides; it gives us a better idea of questions to ask and things to prepare for. Tender hugs to all!
  • Wow! I went and read through a bunch of that link you posted and that certainly would be enough to scare the heck out of a lot of people.

    I have a Medtronic unit and have had it for 6 months. I am very pleased with it. I have been fortunate not to have any of the issues that others have had with theirs.

    My trial was 3 days long and my permanent implant went in the following day. The permanent implant is far more stable than the trial unit was, since the trial leads were only tacked down to the skin, so they were very positional.

    I spent half a day at the hospital and was programmed and and out the door in time to get a late lunch. I had normal post op aches and pain at the surgical sites, but was able to deal with that using only tylenol and celebrex.

    4 days after the surgery I was able to ride in a car, ride the subway and walk around without a problem.

    Last Friday I was able to compete in a 10K walk, and prior to my implant, I couldn't walk 20feet without agonizing pain. The only pain from the 10k was the blisters on my feet. Talk about being thrilled!

    I have no problem with the recharging. I can go 7 to 9 days on a charge that takes between 3 and 5 hours. The recharge unit that I have, will provide me with 2 full charges. So I could leave the land of electricity for 3 weeks very easily.

    I hope this helps.

    "C"
  • I will be getting the trial of the ANS Eon Mini on December 4th and I couldn't be more excited. With all the research I have done, ANS brand appears to be the number one brand for my particular problems - radiating nerve pain. My doc said that if I had more back pain than nerve pain, they would implant the Advanced Bionics model.

    My previous neurosurgeon before we moved only used the MedTronics brand, and after much research, this had me worried. At the present time, the Medtronic brand appears to have a more antiquated pulse frequency type/style/setup. Don't know how to describe it. Although many many people have had wonderful experiences with Medtronic. I think it boils down to personal preference and experience with each brand with the doctors as to what brand they prefer to work with.

    There will be positive and negative stories everywhere, and I for one do appreciate everyone sharing their experiences. For instance, look for my post on my recent psych evaluation for the SCS. Mine took 3.5 hours and was not a quick 30 minute exam like many people experienced. I guess there are statistics to show that people who are depressed or who do not truly believe this will work are not good candidates for the procedure.

    I hope you do some more research on the brands, plus faith in your doctor. I think that is another huge area of concern. Perhaps people who have had negative experiences had a doctor not as experienced. I don't know.

    But I am very excited to try this, and have high hopes that it will help relieve some of my pain. I can't live like this anymore and with my problem being almost entirely nerve damage related, I don't have a lot of choices. If this SCS is a no-go, my final option with be the implanted pain pump.

    But I love the concept of the SCS - where I can be in control of the stimulation. I can turn it up or turn it down depending on what I am doing, what I am experiencing. Some even turn it off at night and such, but my pain never stops. It just is either bad or really bad. Doc expects that I will keep mine on, even at night, but maybe at a lower frequency.

    I have spent hours researching this and feel great about the ANS brand. Have you visited their website - poweroveryourpain.com?? You can read the testimonials, and then if you identify with one of those folks, you can contact them directly. They do not work for ANS, they simply donate their time to helping others, answering questions, personal experience, etc. Perhaps that would help you have a better peace of mind.

    I have already spoken with my programmer on the phone, the person who will follow me in the procedure (and then hopefully implant surgery) and will be setting my programs for me specifically, related to my personal pain experiences and descriptions. She was awesome and answered all my questions. I also have her personal number and can call her any time I want.

    Good luck with whatever you decide. I, for one, will be reporting in detail my experience, come December 4th. I will have the trial until December 9th.

  • I was able to check out the site you posted. That is a lawsuit type board. There would be tons of negative stories on there. I read many of them, and quite a few seemed to be "doctor error" as well.

    I wonder if most people who have successful SCS experiences don't just go on with their lives and not spend time posting on health boards? I try to keep that in my mind when I am researching anything health related. It was so hard for me to decide on my 3rd surgery, for example, because I had had 2 unsuccessful surgeries and wasn't sure I wanted to risk another.

    In my case, I am relying on my doctor, the psych eval and the programmer to let me know if I am an ideal candidate or not. Then it is up to me to decide if I trust their expertise enough to move forward. For me, the answer was yes.

    I would definitely follow your gut on this one and don't move forward if you just don't feel right about it.

    I understand - again, good luck!
  • Trater,
    Spicewood is just west of Austin, more specifically just west of Lake Travis. It couldn’t be anymore beautiful out here. Far enough away for the hustle-bustle but a short commute to work towards town.
    ‘C’,
    I haven’t been on the site long enough to catch your name but I have seen many posts by you and felt we basically went through the same thing. Something that just jumped out was your quick recovery time and release from the hospital after your SCS implant. I understand you are not in the USA, but are things medically different over there in Japan or am I missing something. You posted that you went in, had the surgery and was out shortly after lunch? How was your pain level and mobility once you got home? My doctor told me the only reason they keep us over night is because they expose the spine and want to monitor directly after. I can understand that the implant\incision area is not really a big deal but cutting and placing the paddle against the spinal cord was a little more important. If you don’t mind, please give a little more info about the 12 hours once being home. My unit is not rechargeable, I opted out on that option because I didn’t feel like I would consistently charge it and didn’t want the burden of the extra equipment, even though a minimal inconvenience to me. My implant should last 3-5 years depending on usage. On another note, a few weeks ago I was complaining about the unit being sensitive to my posture and having a lot of pain near my implant area. I did a lot of deep tissue massage around it last week and directly after was very sore. This week it seems like the implant has a little more room to move around and stretching out the skin is not so painful. The biggest change has been, the last few days I have noticed a dramatic change in the consistency of the stimulation. Now when I lean forward the unit doesn’t cut out. Before it just took a slight forward movement for it to turn off but now it seems it has started to bind itself to the spine tissue and create a better contact to the paddle. I am very excited! This week I have reduced my pain meds by 1 a day which I need to let my PM Dr. know because they always get mad if you modify your intake, either way.
    Angie, has Chris been approved for the trial yet or are you still waiting. Please keep us informed. This is very new to me as well, the only difference is I have mine installed.
    Cherish, keep us informed as well. I am curious about your thoughts and concerns and any more information about your SCS leading up to the big day. I am soo excited for you. Also communicating with the technician who will be reprogramming your unit as time goes on is very important. I really like the guy that I contact and seems so sincere, it makes a huge difference.

    Bobby

  • I live in Japan, however I flew to the US for the trial and implant. My medical care is all military as I am a military retiree.

    One of the big differences between the surgery you had and what I had, is that you have a paddle lead and I have the percutaneous leads. So my surgery in the area of the leads wasn't as in depth I guess you could say. They went in through the area between C7 and T1 and then ran the leads up into my cervical spine. I had about a 3.5 inch incision in that area. It was a little longer than the incision for the generator. The wires were run down the length of my spine on one side to meet up with the generator which is just above where a wallet would go on the right side.

    Cervical spine SCS's tend to be a bit more positional (where the stimulation changes with movement) than Lumbar SCS's. So mine changes depending on head movement. It did settle down as the leads scarred in.

    I am careful not to mess around with the pocket that the generator is in, because the company warns about flipping the generator in the pocket, which would require surgery to fix.

    My pain levels and mobility after surgery wasn't too bad. I managed with tylenol and celebrex and distraction by television. Felt like I had been hit with a baseball bat between the shoulders, but it wasn't anything compared to the pain the SCS is taking care of, so I was in heaven. The generator pocket "burned" when I would move from a seated to a standing position and it ached a bit for a few days. I just learned to not lie on my right side for a few days. After that I was fine.

    Mobility wise, I was able to walk slowly for 45 minutes at a time the next day. By day 4 I was being a tourist and going to every museum I could in the DC area. I'd ride the Metro and walk all over the place. The first week and a half I would be tourist one day and be quiet the next day. I was able to do the 30 hours of traveling 3 weeks post op in order to return home.

    As my unit "settles in" there has been slight changes in the stimulation, and I have the ability to change the stimulation patterns, frequency and intensity. I can shift the contacts on the leads and build programs for different activities. I am quite thrilled with the function and having to recharge every 7 to 9 days, is no big deal. Gives me an excuse to watch a movie or two. The battery in my generator is estimated to last 9 years before requiring replacement.

    Hope this answers your questions. If you have anymore, please let me know.

    "C"
  • Congratulations on your 10K walk! That is so outstanding! What a huge accomplishment for you. I am really happy for you. I don't think I'll ever feel good enough to do that, maybe just .1K... Think they have one? lol Anyways, congratulations and keep up the good work!




    Oh yeah, your explanation of your experience with the scs is very good! I'm sure it will be very helpful!
  • Thanks Terrie! We can always make a .1K for you! Never give up, who knows what will be in the days ahead!

    "C"
  • I also have a paddle lead - the Medtronic Specify 5-6-5 paddle - implanted at T7/T8 through a laminotomy. My surgery was done outpatient. I had to be at the hospital at 5:30am, my surgery was first on the schedule at 7:30am.

    The surgery itself took about 2 hours and I had some difficulties in the recovery room, so I was in there until about 1pm. Once I was back in the holding area, my Medtronic rep came in and did my first set of programs around 2:30pm and I was discharged home around 4pm.

    I had post-surgical restrictions of no bending, twisting, or lifting items that weighed more than 5 pounds, so I was pretty lazy post-op. At my 2 week follow-up, all of my restrictions were lifted and I haven't looked back since. ;)

    Oh, and the only time I turn my stimulator off routinely is when I'm sleeping. Sometimes I turn it off while I charge, which is for about 3 hours every 3 weeks. :)))

  • For the first few months I turned mine off or down for sleeping but I would wake back up too soon from hurting. I finally got it programmed where I can sleep very comfortable with it on.

    When I recharge I leave mine on, just at a lower amplitude.

    I was going nuts with an 8 week no BLT restriction. The percutaneous leads have more of a tendency to migrate if not scarred in good. The 8 week restriction of no more than 5 lbs lifting, saved me lots of money. I couldn't go shopping for much of anything. My purse was almost 3 pounds already with my camera and so 2 pounds is not a lot......... I asked the doc "why only 5lbs" and he said that when you tell someone 5 lbs, they'll lift 10. If you tell them 10lbs, they'll lift 20. I hate to say it but he's right!

  • I was thrilled when my restrictions were lifted at 2 weeks. I've been through the 8-week restrictions several times and it drives me right out of my skull! With the 5lb restriction, I couldn't even pick up my cat. :''(

  • C
    Congratulations on your 10K!! I don't care where you placed; you placed first in my heart and respect for even trying! That is so awesome.

    There is a lot to be said for a person's own level of activity prior to having spine problems and the willingness (or moxy) to continue on as close as possible to that level. The more physically fit a person is, the better the outcome will likely be. The only reason I say this is because when I worked for the disability office, I only saw the cases of failed back surgery, or the negative side of ANY surgery for that matter. However, ALL of my in-laws (every blasted one of them!) are active: either tennis, golf, hunting, baseball, walking, etc. My mother in law has had both of her knees replaced, each time was back on the tennis court as soon as the doctor turned her loose; my father in law was back on the golf course after surgery on his neck and later on his shoulder; my brother in law also plays tennis and he had HEART surgery - you guessed it - back on the tennis court and golf course as soon as he was released to do so. I have always thought that spoke volumes with regard to being physically active.

    Another thing that just tugged at my heart strings: Angie and Chris, THRU THIS TOGETHER. Those are the sweetest words to hear. I am sure this means so much to Chris that you are taking the time to research and be a part of his recovery, Angie. That kind of support is so vital to his treatment. I wish my husband would be that involved with my care. Kudos to you! Chris: Angie's a good woman. Better keep her! ;)

    Hope you all have a great day!

    Jeaux
  • Thanks Jeaux! I agree with you that the conditioning prior to, makes a huge difference. One thing I found is even when I was not in good shape (as far as my personal standards) after tons of surgery, I had the drive and the need to get back into shape. I think that alone has drug me through the last several months.

    You are absolutely right, a spouse that is highly involved in the recovery of the other spouse, makes a HUGE difference. Chris is very lucky to have Angie right there trying to figure out how and why!

    "C"
  • “C” = you have a great attitude and your info was very helpful. Thank you! Interesting info on the leads – I’ll be sure to add that to my list of ‘reminders’ to ask the doctor. You have a very positive way of writing, I appreciate it!

    Cherish – I agree with you – I think some bad experiences are due to the doctors and their experience more so than the patient. My faith and my avid research should help prepare us, but there is always that chance, however slim it may be. Thanks for your opinion on the brands. Doc recommended ANS at first, but I had contacted Medtronic and through my contact there, I found out the doctor requested us the same ‘kit’. Nice to know the doctor will work with us on the brand. (So many choices!) Thanks for the info on the ANS website, too – I had been there but didn’t realize the resources you described were available. I will definitely go out there and check it out again. Chris’ pysch eval is Dec 5th so we will definitely be thinking of you! On Dec 4th we get the results for my 15 year old daughter - she may have scoliosis...but that's another topic. I will pray for you that your procedure goes as planned and that you get the relief you need and expect.
    Your comment regarding those with successful procedures not spending time posting on health boards is a real eye opener! What a great way to look at it. They do say negativity spreads faster...

    Bobby – we are in the process of getting approved. We have the pysch eval Dec 5th so we are hopeful. Again, great info and advice. You guys have really helped my question list to the doctor grow!

    So great to read about some of the quick recoveries and the ups/downs of the procedure. If anything, this will help us to feel normal as we go through this process. Our contact at Medtronic offered to meet with us to demonstrate the device and answer any questions – I feel very blessed. And again, I feel blessed that our doctor will give us some choices rather than just telling us without opinion.

    Jeaux – I agree with you that you should try to be as actively fit as possible. Your body depends on you (even if it doesn’t necessary want to be make it easy.) And thank you for the kind words. I don’t see how someone who says they love you would not be willing to stand beside you through this kind of pain. (Not that your spouses don't love you - just not the way I learned to love.) I recall my dad when his back went out – he was such a hard worker and never cried, but he did that day. He was stuck on the floor for hours until my brother came home. Once they got him to the hospital he had emergency surgery to repair the damage. My mom was there for him, and likewise, when my mom had a stroke in 2001, he was there for her. The doctors couldn't believe he did it - but that is what I grew up learning about love. True love is unconditional; vows to love through thick and thin, better or worse, sickness and in health - they are to be kept, no matter what. As Chris told me this weekend, “Love is when someone feels your pain and is right there with you to see you through it.” I couldn’t imagine standing by and letting him go through this alone. For all of you out there, know there is someone who cares even if they don’t know exactly what it feels like or cannot fully comprehend exactly what you are going through. And keep your hearts and your prayers lifted up – for they are heard. Love and gentle hugs to all!
  • My sister is having this procedure this Friday. She has had back surgery with hardware. The poor thing has tired everything. She is only 44 and bed ridden, on all kinds of meds. She has no quality of life at all. She had tried the spinal injection's however they could not get through the hardware to where they wanted to the injection. Do any of you think this will hinder them getting to the right area for the implant. This is her last hope. She called me today half in tears because she does not know what she will do if this does not work. She is afraid to believe that this will help.

    cherish22 - you said you had hardware and the cage that is what my sister also had. However, the first year after surgery was better as time went on the pain has taken over her life. I was wondering how you made out with yours.
  • The first few months after my 3rd surgery, where I got all hardware, were pretty good. I was able to walk 2 miles a day, etc. But then, the nerve pain slowly started coming back and now, I have permanent nerve damage.

    I had difficulties with the procedures, both trial and permanent placement, of the SCS (spinal cord stimulator) due to scar tissue and some unknown "anomaly" in my back. It was very very difficult for the doctors (2 different ones, an anesthesiologist at the pain clinic did the trial, and a neurosurgeon did the permanent placement.)

    I had 3 surgeries in 12 months, so I knew I had a ton of scar tissue.

    What level does your sister have fused/hardware? Mine was L5-S1, almost the lowest you can go, just above the buttocks.

    The leads for the SCS will be placed mid-back, but if using the percutaneous leads, they will enter just above the low back and thread them up the epidural space in the spine. This is where my doctors encountered problems. My leads kept twisting, couldn't be controlled properly (as normally they can be turned, positioned, etc.) and then during the trial, one lead kept going "in the ditch", which I learned means on top of the nerve roots. Since the patient is awake, you get to hear all their talking. (She will have lidocaine in her back where they are working though, and should be comfortable.)

    My neurosurgeon is excellent and he had to work his rear off to get mine placed (I have 2 percutaneous leads with 8 nodes each, total of 16), but he did and now I am nearing being scarred down and freedom to get back to as much of a life as I can. I was also "recliner-ridden", 23 hours a day because otherwise, the nerve pain made me want to die. Seriously. Only non-movement gave me any peace.

    On cases that are too difficult (and maybe for other reasons as well), doctors will use what is called "paddle leads". With these, the doctor's don't thread the leads up your epidural space. Instead, they cut an incision mid-back (thoracic), do a mini-laminotomy cutting away some bone, and sew the paddle leads down in place, in one particular place. There will still be the cords going down the back to the pulse generator, wherever that is implanted on the hip or abdomen. With the paddle lead, the patient is typically knocked out the entire time.

    With the more common percutaneous leads, the patient is awake. Maybe has some Versed, but not much because once they get they leads in place, they will turn it on and ask the patient where they feel the buzzing. The patient needs to be lucid and able to answer those questions, as placement of the leads makes all the difference in the success or failure of the SCS. The doctor will continue to move the leads until the patient reports "buzzing" in their pain area.

    Once the procedure is over, your sister will have a programmer (who may become her new best friend!) and he/she will start playing around with different programs to see what feels good to her. I have 2 - one for day and one for sleep.

    My high hopes were warranted. The SCS experience has been amazing. In fact, last night I had some back pain, back soreness (very rare for me, I normally just have radiating nerve pain), and I mentioned it to hubby. He beamed when he told me, "Honey, you know why?? It's because you are doing so much, you are "normal" again. We go everywhere, do everything, and then sometimes at night, your back is a little sore. That's because you were so out of shape from being stuck in the chair, but it will get better, honey!!"

    You would think HE got the SCS. He has gotten his wife back and is getting the joy of watching her get her life back - ME!!

    Your sister feels how we all feel at some point - why do another procedure, another surgery.....none of the others have worked. Well, the difference with this procedure is that is isn't going to "fix" her problems, it will do something even better - block the pain signals from getting to her brain. It's the Gate Theory of Pain if you want to read a little about it. While her brain will perceive "buzzing/tingling", the horrid, destructive "false" pain signals coming off her nerves won't make it to the brain, so in that way she will get some relief. The goal is 50% or more reduction in pain.

    For me, 50% reduction would have been HUGE and I went in not expecting perfection. The trial gave me about 75% reduction and with the permanent, I'm at about 80% right now. Now, I'm still on my LA meds, have decreased to almost nothing my breakthrough meds and muscle relaxers. I will wait a few more months before attempting to decrease my LA meds since we are going on a big grip next week. Want to be fully stabilized before I make any huge changes.

    A big key, though, and it is BIG is that the patient must believe this procedure will work. Usually, there is a psych evaluation that will weed out people who are negatives, people who are depressed, people who don't believe anything will work anymore OR people who have a false confidence believing this procedure will cure their pain 100%, because that won't happen either. They only want patients who are realistic yet hopeful - not too much either direction. And being depressed when bedridden? That is normal, but is she hopeful for the future? Did she have the psych evaluation? Mine was a 3.5 hour "ordeal" (I had a 567 question test I had to take and due to my pain, it took me forever) - my doc is VERY careful who he puts SCS's in and as such, he has a huge success rate. Other's I've heard had short little meeting with a counselor - lucky dogs!! lol

    Try to help your sister relax and be positive. I don't think her doctor would be doing this unless he thinks it will help. Does she have the radiating nerve pain? I know from your vantage point it is hard to watch her life, but we so need people who will help cheer us up and who will let us have our "mood swings" as part of our experience. The constant pain is very debilitating.

    Keep us posted on how she does!!

    Cheri

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