What should I do dont know about surgery

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. 

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

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.

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 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

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

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.