What should I do dont know about surgery

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Hi all I have had this nerve condition for 18 years and its affected my back, legs, feet, and ankles. I have been thru so many surgeries and I have had 3 or 4 neurostimulator implants put in. The last implant I had put in was from nevro and it's the one to where u can drive with it on there is no numbing or tingling sensation going thru ur body they said this one would completely help 100 percent. I had the surgery done in August of 2017 and since the surgery there has been no change the implant hasn't done anything for me. When I went back to the dr in November or December they took a xray and said one of the leads had moved in my back and not to worry to keep using the machine so back in January nevro had reprogrammed new settings on the implant so I had to go back to the dr this month for my medication follow up and to see nevro again and I have told them that this is not working for me. I have been talking to the dr to see about getting g a drug pump put in cause I have such a hard time taking pills and I feel like the drug pump would be a better fit for me

So when I seen the dr they took another xray of my back and the leads in my back have become dislodged and they r looping around they said so that's why my back is causing more pain they said. So the dr said his recommendation would be to replace the leads in my back. He said with the drug pump I would have to stay in the hospital for a couple of days and have one hell of trial for this to work. I am needing advice on what to do. Do I go thru and have them replace the leads in my back knowing that this could happen again and give the implant another chance to work or do I just scrap this whole implant and do the drug implant. Please if anyone has gone they what I'm going thru please let me know. Thank u

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12 Replies

  • Posted

    Hello 

    I didn’t have any implants. Refused as any trauma to my crps causes months of flares.   It sounds like it didn’t work at all from the start ? I suppose you could give it one more try if you trust they will do a better job this time and closer monitoring ? Drug pump. Again I don’t have one but I suppose with stimulator you will be able to decrease medication etc.  

    Have you tried any ketamine infusions ? What drugs do you take ? 

    My crps is very sensitive so any surgery makes it spread more so I cannot risk any. Ketmaine has helped me. 

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    • Posted

      Hi thank u for responding yes I have tried the ketamine infusions and that didnt help. I have had so many different infusions and injections been on so many different meds, tried everything that there is out there. The medicine i take for pain is methadone and that isn't even doing hardly anything since I have been on it for so long. With the stimulator it doesnt decrease medication. I am just tired of nothing working and I didnt know if I should try to have them replace the leads

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    • Posted

      What you taken morphine before?  I know morphine based type drugs make me worse.. do not take away pain just give me severe side effects and other issues....  hav eyou tried to change your diet? How long have your had CRPS and what areas of body does it affect you. Have you tried CBD oil? I wouldnt go through with more leads if they do not help. whats the point/  the whole idea about stimulator is to decrease medication.

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  • Posted

    What kind of drug are they pumping. I don't have one but I'm thinking about asking. Oral pills are not helping. Sounds like this isn't working out for you. RSD is incurable though I'm keeping my options open. Very bad situation here. I'd like to know what they are using.

    Thanks

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    • Posted

      I believe the drug they would be pumping would be a morphine pump. I have been on so many pills and they dont even help at all. I take methadone for the pain but have been on it so long that it doesnt do much anymore

      I have been thru so many injections and fusions and so many surgeries. They said this implant that I went thru is the best out there then why isn't this helping me. That's why I'm wondering if I should go thru and have the leads replaced or do the drug implant.

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    • Posted

      Be careful of those sise effects from opioids the could make you burn even worse. The more surgical procedures can cause more nerve damage. My surgery made an existing problem get worse. I had to have the surgery. If I could go back and avoid falling I would. That cannot be changed. I wish you the best.
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  • Posted

    Hello, I've never had neurostimulators implanted on my body but I do know of many patients who have and ended up removing them because they had no results.

    There are many RSD/CRPS support groups on Facebook with people who share all their experiences. I highly advise you to join a few of these, especially local groups as some members sometimes meet.

    Have you tried Ketamine infusions?

    Sending you warm/gente hugs,

    L.

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  • Posted

    Hi Strbshortcake,

    Can you tell us a bit more about your current condition? Do you just have the signs and symptoms in your back, legs, feet, or do you also have problems with things like digestion, or swallowing? Do you ever have problems with sound and light levels? How about stuff like dizziness and vertigo, or ringing in your ears?

    Don't mean to pry, but I'm a nurse and a biologist from B.C. (Before CRPS wink and am just trying to get a bead on whether or not you have the signs and symptoms of centralized pain, otherwise known as Central Sensitization. If so, no implant is really going to manage all your symptoms.

    I had the early signs and symptoms of CRPS from a sprained knee down to my toes. No one caught it, as I was the only one who saw the color changes (they lasted less than a minute, so never even could snap a pic with my phone), and the tingling and pins and needles/burning sensations got better when the weather improved. This was 3 years ago.

    I had surgery on the knee, as the sprain never healed and the pain just got worse. After the surgery, the burning pain, etc., came back with a vengeance in the lower leg, and then spread like wildfire throughout my entire body including weird places like inside my ears and mouth, nose; even my eyeballs became really weirdly sensitive to cold, and then within another year, I had digestive issues and problems with light and sound, etc..

    One of the premier CRPS doctors in the Midwest first offered to implant a pain pump, and a few months later, suggested I might get some relief from a spinal cord stimulator, or in my case, two of them:  One upper, one lower spine. But he admitted upfront that it wouldn't do anything for the pain in my face, neck, and head. I said no thanks. For me, low-dose Naltrexone and Ketamine infusions along with the Ketogenic diet and a lot of dietary supplements have proved invaluable. In warmer, steady weather systems, I can actually spend time most days in my garden; I do have to sit down a lot, as I still get dizzy at times/tire easily and have to watch that I don't overdo, or the next 24-72 hours I experience symptom flare, then life just sucks twice as badly as baseline. You would think after 3 years I would have learned this lesson, but apparently not so much smile

    As a nurse, I just don't like the idea of having a highway from the outside world to my spinal cord, which is what an implanted pump often is. The failure rate and the percentage of implant patients who end up going back in to have leads replaced, or repositioned, etc., is estimated to be at least 25% of all users. Because of the "highway" issue above, I also worry about infection. It's a relatively uncommon problem, but when it does occur, it can be quite severe because it's the central nervous system that's affected, after all. Also, studies have shown that even in the patient population that does get significant relief from the implant, pain levels and therefore, quality of life improves for 2-3 years, but functionality doesn't improve much: ie: If you were unable to work before your implant, chances are the implant alone isn't going to get you back to work, statistically speaking; ditto the rest of your activities of daily living; no big improvements in these for the patients that choose the implants over patients who do not. And the implant population rates their pain at a very similar level to patients without the implant, after the 2-3 year mark. In other words, whether you get the implant or not, in 2-3 years, you will statistically feel pretty much the same pain severity as a similar patient who never got the implant in the first place.

    Ofcourse, that's just the average outcome; you could be different as an individual.

    One other thing to consider: Every time you have a surgery, it's another trauma to your body. Only difference between a surgery and falling down or getting ill, say, with the Flu, is that surgery is a scheduled and (hopefully, anyhow!) sterile trauma to your body. And you are probably well aware that ANY new trauma has the potential to cause a major flare in and of itself. In the literature there are some reports of spinal implant surgery causing onset or worsening of pelvic edema, or even vulvodynia in female CRPS patients. I already have both ( fortunately, mild and intermittent at this time) but I sure don't need that stuff getting any worse. I really, really like to be able to sit upright, thanks very much!

     

    I realize everybody's different, and has different demands on them in terms of job, family life, community responsibilities, etc., so what's right for me isn't necessarily right for anybody else. I also get that if I just had CRPS of my lower body, I might have made very different decisions regarding at least a trial of a pain pump or spinal cord stimulator.

    Sounds like a major consideration for you, is that you'd like to drive a car. I don't work currently, as the state of Illinois has determined I fit the criteria of totally disabled; I have collected SSDI for two years now. I'm not prohibited from driving, but I find that practically, it doesn't work out well for me to do so, as it requires a lot of attention to sensory information what with the stop, look and listen component necessary for safety: I end up exhausted and overwhelmed just from driving our car or truck home from the repair shop less than 2 miles from my house. That is the only time I've driven in the last 2 years, I believe. 

    For me, by the time the doctor got around to making the recommendation for implants, the Central Sensitization problems were actually worse than the peripheral body pain and cramping, etc., so I said no to any implants.

    I must admit that for me, part but not all of my decision had to do with the problems I talk about above, but also with the fact that for me, the CRPS happens to be from a work injury. So I have to rely to a great extent on the work comp insurance people to authorize and pay for my care. I was having nightmares in which I got an implant, and it malfunctioned some way, somehow, and then the insurance company denied or delayed the needed repair, replacement or removal. I know myself well enough to say for a dead cert that if I had to look at those leads coming out of my skin, knowing that it was entirely up to people at an insurance company who had dollars and cents as their primary concerns rather than my health or welfare, it would make me want to stay in bed and sleep for however many months or years it took to get the situation straightened out. Period.

    So I just won't let myself be put in that situation, where the insurance folks could literally decide whether I can receive needed treatment, or not. Too crazy-making!

    Keep us posted on your progress, and best of luck, whatever you choose smile

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    • Posted

      Well said Sabrina. Hi strb! Sabrina gives very good insight and I hope you're taking in consideration what she is saying. It is true what might work for some may not work for others depending on the severity and a different diagnosis of what else may be going on. That's why I urge you to do all the research yourself and that includes the references at the bottom of these websites. Very knowledgeable doctors who have studied over long periods of time on CRPS, Trigeminal Neuralgia and Occipital Neuralgia (these last two only affect the jaw, face, side of head, back of head, top of head, one eye or even both in worst case, ringing in the ears and ear pain deep inside and outer part of ear, and even the inside of one's mouth. I speak to you with much experience in this due to the fact that I have all of the above. NO KIDDING. And yes, I was told the same that a baclofen pump or morphine pump "would not" help with the neuralgias of the head. Research has lead me to believe that this true including the stories I've read from others. I have severe 24/7 muscle spasticity or spasms in my upper body and left leg. I had an appt. with a movement disorders neurologist who to me a baclofen pump will give mostly relief in the lower extremities for muscle spasticity (a word you may want to google) or the spasms with chronic muscle soreness. Possible it may help the upper limbs but that depends on the severity. I specifically asked about my neck and my head. She made it clear that you won't get relief from a baclofen pump in those areas. Yes, you can got get other opinions but you know how expensive it is to only find you may get the same outcome. I think most will agree that another surgery that will be costly and no guaranteed is a risk. MORE NERVE DAMAGE. My surgery made an increasing trouble in RSD or CRPS worse. I know exactly what it's like to suffering from the head down. I won't go into those details because I believe I've already wrote to you about this. I do respect that these are your questions and we all don't have complete answers, hell nobody does yet. Ive rambled enough. Again, Sabrina is a big help

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    • Posted

      I agree Sabrina is the best. I am only learning myself. 

      Jimmy. In relation to baclofen. I get spasm in neck mostly all day long. Very bad this week.  I am taking 2.5ml of baclofen twice a day. I feel it’s waste of time.  Reading your post and what your neurologist said maybe I am right ?

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    • Posted

      I believe the movement disorders neurologist is right. I also take oral baclofen, just 10mgs 2x day am/pm. I also have tizanidine (Zanaflex) 4mg 3xday, zanax 1mg 3xday. All for muscle spasms that are nonstop. Not sure how my pain management appt on 17 of May will go as far as continuing these meds since they were given to me by my neurosurgeon after my surgery on 2-26-18. I pray that they will continue my regimen. I certainly need them. Hang in there, you know I know this is hard. Still trying to learn to except this.
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  • Posted

    I have a Nevro SCS in for my neck and an Abbott in for my lower back.  What I dislike about the Nevro is that it doesn't have a tingle mode so that you can feel it working, it is only that high frequency mode that you can't feel.  I had a super trial with it, it fixed both my neck pain/stiffness and my arm neuropathy pain and so I said let's go for it.  Well, the permanent implant has never worked for my arm pain.  They have played with the programming now a couple of times, verified by X-ray that the leads are in place, and it still only works for the neck pain.  My neck muscles can get really tight still, so I wonder if the thing is even working, I decided to just turn it off and see if anything changes.  It did, within a few hours, my neck muscles were not only tight they hurt a lot.  So, it was definitely working.  If you already had a good trial and went through the permanent lead placement surgery, you have done the hard part, getting the pocket dug for the battery pack.  You won't have to do that again, they will just pull out the curled up leads, thread in two new ones, connect them to the battery, anchor them and close the hole. It will be just a small less than an inch incision. I think I would give them a second chance since you have already put so much effort into this.

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