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    Old 09-05-2012, 09:30 AM   #1
    Moldova
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    Spinal cord stimulator surgery

    Hello,
    I wonder if anyone here had this done and how do you feel after insertion? Is it easy to run and may you tell me that this was worth it? How much pain you had before SCS insertion and what is it now?

    Thank you in advance
    Moldova

     
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    Old 09-05-2012, 10:38 AM   #2
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    Re: Spinal cord stimulator surgery

    My husband had this stimulator but it caused him to feel very nervous since it stimulates the spine to trick your brain that there is no pain. The shaking from the stimulator didn't feel good to him and after insurance paid $60,000.00, I think we shouldn't have had it inserted into his back. We had to make sure that the battery was charged or get a new one but we decided it didn't seem to work, so he has it in his back and it is ineffective. He can't get into an MRI because of the stimulator. I hope it helps you but sometimes I wonder if doctors are getting a lot of money to ensure pain-free gadgets to plant into our bodies. Best wishes.

     
    Old 09-05-2012, 10:58 AM   #3
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    Re: Spinal cord stimulator surgery

    Dear Renco,
    Thank you so much for such fast reply and your honesty. I expect only honest opinions since any invasion for me is very dangerous due to Arachnoiditis, may cause even more scarring of spinal cord, so if I risk it, I want to get as much info I can. And no matter what my PM Dr tells me, still great to get first hand opinions, from people who live it. So thanks again to you.
    I am so sorry you husband went through this for nothing. Now, do they have to remove the whole thing or it stays for life and this is why he can't have his MRI if need one? I had same thing with: 1. Pacemaker, 2. Bone growth stimulator inserted during surgery into my spine. They removed the stim 11 month later, but wires permanently inserted and prevent from having MRI.
    Please forgive me for asking too many questions, but I really concern and before agree to anything, want to make sure I am in a good place. I am not sure yet if this is 100% , it will be done only if my pacemakers/cardiologist will let this happen. But I want to know in advance.
    I asked my PM yesterday how good are results for people who had this stim done. He said everything is individual, but during one week trial I will see if this one for me or not.
    I agree that one week may just not be enough, but who know? When your life quality is so poor and pain rules your life, I am up for anything just to have some quality of life.
    Did your husband feel good on trial? Did this tremor bothered him back than? Did his pain went down or not?

    I definitely need to do my homework well; not looking forward to a new invasive procedure, my insurancewasting so much money for nothing.

    Best wishes to your husband
    Moldova

     
    Old 09-05-2012, 11:52 AM   #4
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    Re: Spinal cord stimulator surgery

    I'm so sorry you are having so much pain. My husband did have the trial stimulator and it seemed to not bother him but when it was inserted it made him very nervous inside since it tremors a lot. You can regulate it and I hope it is something that gives you quality of life. My husband has spinal stenosis so the nerves hurt if he is up too long but now he is retired and doesn't move as much and is on morphine so it seems to help him now. I wish you the best. I get cortisone epidural shots in my back four times a year and it seems to help and keep the pain manageable. I had sciatic pain and bulging discs and arthritis. I've had cancer twice and survived so all these pains are manageable and I have a quality of life. Pain is not pleasant and can make your life very difficult. I pray that you find out all you can and do what is best for you and your family.

     
    Old 09-05-2012, 01:04 PM   #5
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    Re: Spinal cord stimulator surgery

    I had the SCS implanted in 2006. The leads were placed at about T7 or so and the device was in my left hip.

    It took a little while to get used to the feeling of this vibrating feeling in your leg. And sometimes I would get this jolt if I moved in a different or unexpected manner. You have to play with it to figure out what the best setting is for you and what you can tolerate.

    I had severe leg problems mainly the left with numbness and trouble sitting for long periods of time.

    I eventually had the device removed in 2011 because I came to realize that it was ineffective for me. I think my problems were too far advanced and the SCS didnt help me.

    I knew someone recently that had it done and only left it in for several months maybe 6 or so cant remember exactly how long. She found it did not help her at all.

    But on the other hand I can think of 2 people that I know that felt they benefited from the SCS. I have lost touch with those people so I don't know if it is still benefiting them or not.

    I think its worth a shot in hopes that you are one of the lucky ones that it helps.

    Good luck & keep us posted.

     
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    Old 09-05-2012, 07:06 PM   #6
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    Re: Spinal cord stimulator surgery

    I had peripheral scs done 2 months ago. No regrets. It is not perfect but definitely helps and am down over 70 percent in narcotics.

    If you have a pace maker I do not think is is recommended, however. Any other questions?

     
    Old 09-05-2012, 07:18 PM   #7
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    Re: Spinal cord stimulator surgery

    hi, I do NOT have a stimulator but am a member of another board and have read a lot of discussion about it. One thing I don't see discussed here is what type of dr is doing the insertion. I have read from others experience is should always be a neurosurgeon. what kind of drs did others have? Cathy

     
    Old 09-06-2012, 09:03 AM   #8
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    Re: Spinal cord stimulator surgery

    Thank you all so much for your reply's it means so much to me.

    I hear so many different opinions and it scares me to death. Why? I read that SCS is only 50-70% success rate. Not only I have pacemaker, I also have Arachnodities . Since they have to go with wires through all the scar tissue, it can be dangerous; due to Arachnoidities ones spine cord is very scarred. I have dear friend of mine who had this done and left for life permanently disabled with severe RSD.
    Too many questions, too many worries...
    Usually Neurosurgeons and your PM (if he is Anesthesiologist too) do the procedure.

    Pebblebeach,
    so you had 5 years of good success or still not? When they removed it, were they able to remove all wires or something is left still?

    Wishing you all good health and only great news - every single day!!
    Moldova

     
    Old 09-06-2012, 09:11 AM   #9
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    Re: Spinal cord stimulator surgery

    Moldova:

    I have to be honest, while I had the SCS for 5 years, it probably should have been taken out a long time ago. I can't really give you a good reason as to why it wasn't done.

    I finally had it removed, because with the SCS implant you can NOT have an MRI. CT scans were done on me but didnt give us the details we needed. So since the SCS wasnt working properly for me and I needed a better way of diagnosing my problmes we removed the SCS so the MRI could be done.

    As far as I know or thought all the wires were removed when the SCS was extubated.

     
    Old 09-06-2012, 10:17 AM   #10
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    Re: Spinal cord stimulator surgery

    Thanks Pebblebeach, this is a good information.
    With all my issues, I cant have MRI for 3 years now due to pacemaker anyway and it doesn't go anywhere, it stays with me for life.
    Someone just answered my post on chronic pain board saying how lucky this person is with the stim and that he is planning to have another one inserted to have another area covered.
    I guess depends on a luck; on a problem; on Dr, etc. I get that and this scares me to death, I don't know what category I am in and do I have luck ?

    I am very sorry that you went through all this with no good results. My heart goes out to you, dear person. But I hope your pain is under good control and you can enjoy your life. After all, you tried your best, as well as we all try to have some life quality, otherwise all doctors wouldn't be so busy... And if not working, at least we tried as long as this doesn't bring more issues. Like I mentioned earlier, my dear friend left permanently damaged with severe case of RSD after SCS was inserted. They had to remove the whole thing very soon after severe symptoms developed. She is very worry for me to go through this and doesn't recommends this procedure to anyone. The only thing, she had it done by not knowledgeable DR who was recommended by her insurance, they always find her these cheap Drs with no specialty at all.

    I was told it would be done by a very good Neurologist who does a lot of these procedures and by my PM- Anesthesiologist MD with Radiologist and his machine in a room. I guess, after all, I will take this chance and if this thing will now work for me, at least I tried.

    Thank you again for your honest opinion.

    Stay well,
    Moldova

     
    Old 09-06-2012, 10:58 AM   #11
    pebblebeach3
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    Re: Spinal cord stimulator surgery

    Moldava:

    If you do have the SCS done remember as I think I stated in my prior post you can NOT have an MRI done because of the SCS implant.

    As to my pain management, I have to be honest I am frustrated. First let me tell you my background:

    - 1994 lumbar surgery herniated discs;
    - 1995 cervical stenosis surgery;
    - 1997 lumbar surgery with harrington rods;
    - 2000 cerviical surgery with harrington rods; 12 hours surgery
    - 2006 & 2011 SCS implant and removal.

    I have had 2 other surgeries:

    - 2003 remove blood clot left leg;
    - 2007 pancreatic cancer

    EMG tests showed severe arthritis in cervical and lumbar spine; severe nerve damage in lumbar and cervical spine; periphereral neuropathy

    What are some of my issues?

    - severe numbness in my legs, left is the worst;
    - balance issues;
    - difficulty sitting long periods of time
    - neck pain with radiating pain to the shoulders;
    - weakness in my arms, neurological examination by neuro surgeon shows a decrease and my arms are getting weaker;
    - MRI showed myelmalacia of the cervical spine;
    - MRI of the lumbar spine showed it was inconclusive due to the Harrington Rods obstructing any clear views
    - MRI I can not have one with contrast becasue I was born with one kidney and I am in kidney failure as well. contrast will affect the kidney and is dangerous for me to have;
    - diabetic which may be part of the neuropathy issue and spine as well

    I am currently on Hydrocodone and tizanidine. I try to take the hydrocodone only when necessary. But the RX calls for 1 1/2 tablets 4 times a day if needed 7.5-750 mg.

    I am worried about being on the hydrocodone. I think I am having some side effects from the medication.

    My neurolgoist who prescribed the pain meds has diagnosis chronic intractable pain which from the few times that I googled it, it seems to indicate that my treatment options are running out.

    As to the myelomalcia of the cervical spine; my surgeon is afraid to touch me for many reason; kidney issues and diabetes adds to the risk of surgery. But for him to get to that area of the neck would require going thru the sternum which according to my surgeon he said would be a nightmare of a surgery.

    I feel as though I am not only running out of options; but I fear the future. I don't know if there is any way of stopping or slowing the progression at this point in time. I am frantic at times.

    I go to the gym trying pool therapy; sauna to help with the arthritis etc.

    Not sure what else to say at this point in time. I feel like I am at the end of the road and fear that at one point in time I will be wheelchair bound.

     
    Old 10-11-2012, 08:56 AM   #12
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    Re: Spinal cord stimulator surgery

    Dear Moldova, i have adhesive arachnoiditis also. Saw one neurosurgeon that said that if we get one shot to get into your dura without causing any more damage we need to put all the hardware( meaning spinal stim & morphine pump) that i would ever need. But, he was leaving so referred me to a pain mgmt neurosurgeon. He wouldnt even talk about doing pump, just spinal stim. After my husband & i asked questions he said this poignant statement that made us decide against it. " Ma'm, you will STILL need pain mgmt and will have to take narcotics! Why would i take this risk if i still would need narcotics! I havent gotten to the point where they dont work, if you dont mind my asking, what did you decide? And how are you affected symptomatically @ this time with arach? So very sorry that you have this! Im interested in how you are doing. Thank you for your time. I would really like to keep in touch with someone else who has this condition. I wrote a post under Share your pain panagement story thread. Title " iwas so blessed but didnt know it" I would love for you to read it, if you feel ok to do so. I would appreciate it so much. I would like to hear your story and any ideas, info that you might share would be so valuable. Thank you.

    Moldova[/QUOTE]

    Last edited by gmak; 10-11-2012 at 10:58 PM. Reason: put in identifying info

     
    Old 10-11-2012, 11:54 AM   #13
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    Re: Spinal cord stimulator surgery

    Moldiva,
    I don't know if you have made up your mind about doing the trial for the scs ( stimulator) or not, but be sure, if you decide to , base the trial on the amount of relief that you get from it alone- the criteria from the manufacturer's are - 50% or greater reduction in pain levels.
    I just read the contraindictions again for implanting the device and having a pacemaker is a relative contraindication so before going ahead with the trial I would definately consult your cardiologist and make sure that he is aware of the contraindication and can reassure you that it is okay to go ahead.
    I have seen lately that many PM doctors are recommending getting a scs implanted permanently even when the pain relief during the trial is less than the manufacturer's recommendations and some doctors have gone so far as to tell patients that the scs will give them pain relief for mechanical problems as well as neuropathic- meaning that if there is a problem in the lumbar spine/chronic back pain, that the scs will relieve that as well and that is not true. It may in some rare cases provide some relief but it is not meant to give low back pain relief, many people have also found that the pain relief gotten during the trial may not be the same at the time of the permanent implant. While it is true that the stimulator pattern may and usually do need adjustments , but patients are often told that the leads need to scar in, the problem is that once scar tissue builds around the leads, the patterns of pain relief may change for the worse. Some patients don't like the feeling that the stimulator gives once implanted near the spine canal. If you have stenosis, in the thoracic area if the leads are being placed in that area, you need to be careful since stenosis can worsen over time.......make sure that the diameter of the canal is sufficient to allow the leads not to wind up compressing the canal further.
    The leads usually are not removed during the removal of the permanent implant. The reason for this is the scar tissue. In general, the leads are encased in scar tissue over time so removing them would require a more invasive surgery. And as pebbles mentioned, no MRI's in the future. CT scans show bone better than muscle and nerve roots so MRI's if you believe will be needed to follow the course of the arachnoiditis might be a problem down the road....
    Those are just some things that I found out when I talked to the rep from one of the companies and in talking with other patients when I was considering it for my own back issues.
    Back

     
    Old 10-11-2012, 02:44 PM   #14
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    Re: Spinal cord stimulator surgery

    It really irritates me how casually surgeons tell their patients to "give the SCS a try...." without ever discussing all the potential risks involved....They make it sound like it is such an easy solution.

    When I cut my surgeon off when he was telling me I should try it, and I told him I absolutely was not interested in "trying" it until it was the absolute last option available to me, he was really surprised and couldn't understand why I didn't want to just "try it." He of course, does not do the surgery to install the neurostimulator...and once a patient has one placed, he probably never sees them again...so maybe he doesn't understand all the negatives about them.

    I hate it when I see someone who thinks this is going to be an easy fix for his/her pain....

     
    Old 10-18-2012, 05:27 AM   #15
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    Re: Spinal cord stimulator surgery

    Quote:
    Originally Posted by pebblebeach3 View Post
    Moldava:

    If you do have the SCS done remember as I think I stated in my prior post you can NOT have an MRI done because of the SCS implant.

    As to my pain management, I have to be honest I am frustrated. First let me tell you my background:

    - 1994 lumbar surgery herniated discs;
    - 1995 cervical stenosis surgery;
    - 1997 lumbar surgery with harrington rods;
    - 2000 cerviical surgery with harrington rods; 12 hours surgery
    - 2006 & 2011 SCS implant and removal.

    I have had 2 other surgeries:

    - 2003 remove blood clot left leg;
    - 2007 pancreatic cancer

    EMG tests showed severe arthritis in cervical and lumbar spine; severe nerve damage in lumbar and cervical spine; periphereral neuropathy

    What are some of my issues?

    - severe numbness in my legs, left is the worst;
    - balance issues;
    - difficulty sitting long periods of time
    - neck pain with radiating pain to the shoulders;
    - weakness in my arms, neurological examination by neuro surgeon shows a decrease and my arms are getting weaker;
    - MRI showed myelmalacia of the cervical spine;
    - MRI of the lumbar spine showed it was inconclusive due to the Harrington Rods obstructing any clear views
    - MRI I can not have one with contrast becasue I was born with one kidney and I am in kidney failure as well. contrast will affect the kidney and is dangerous for me to have;
    - diabetic which may be part of the neuropathy issue and spine as well

    I am currently on Hydrocodone and tizanidine. I try to take the hydrocodone only when necessary. But the RX calls for 1 1/2 tablets 4 times a day if needed 7.5-750 mg.

    I am worried about being on the hydrocodone. I think I am having some side effects from the medication.

    My neurolgoist who prescribed the pain meds has diagnosis chronic intractable pain which from the few times that I googled it, it seems to indicate that my treatment options are running out.

    As to the myelomalcia of the cervical spine; my surgeon is afraid to touch me for many reason; kidney issues and diabetes adds to the risk of surgery. But for him to get to that area of the neck would require going thru the sternum which according to my surgeon he said would be a nightmare of a surgery.

    I feel as though I am not only running out of options; but I fear the future. I don't know if there is any way of stopping or slowing the progression at this point in time. I am frantic at times.

    I go to the gym trying pool therapy; sauna to help with the arthritis etc.

    Not sure what else to say at this point in time. I feel like I am at the end of the road and fear that at one point in time I will be wheelchair bound.
    Pebble,
    My heart goes out to you, I know how hard life is when we are not well. I know that first hand, trust me.
    Yet, you cant say you are at the end of the road, dear heart. You are a fighter, you are a strong person, you done it all and you still here!!!
    So you are not going anywhere, you got a chance to enjoy this life a little, to be with people who love you for a long while, so do that!

    I hear you; each time I went for another of my 12 serious surgeries, I always thought: please God let this be my last one, I cant survive something like this again. But I survived. Not only that, but when I thought now I will be fine, I was diagnosed with MS, Lupus and very advanced RA with every part of my body involved by now. This is life long conditions, I have to fight'em every second of my life.
    On top of Arachnoiditis, terrible complications after my spinal surgeries, damaged heart and lungs due to RA...
    But you know what? Every morning I am by the window of my bedroom, after sleepless night, watching the sun rises and it makes me so happy to know I am here to see that. I am the lucky one.
    Life goes on and we in it to have some fun too, just find what you love to do and try to do it as much as you can. This helps to take your mind away from negativity, from terrible thoughts and pain...
    I hope you have good people in your life who love you and happy you are here.
    My SIL just had her surgery for pancreatic issues; it was very hard to see her going through that, a young woman who never been sick in her life. I hope you will be OK and I am sure you are here for a reason. Yes, I am a believer of it. You are much stronger than you think, so please don't you give up.

    Hugs, Moldova

    Last edited by Moldova; 10-18-2012 at 05:28 AM.

     
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