Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-30-2009, 07:00 AM #21
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Placement is very important with Lidoderms.

I find they work best for me away from where I feel my PN pain,
and higher up along the nerve route to the spinal cord.

I use anatomy pictures from the net to place mine.
If I put them right on the pain, they don't work.

I've been using them since 2002. Originally they were for a severe MP condition (meralgia paresthetica). After 2 wks of using them every day...the nerve (lateral femoral cutaneous) stopped firing and I had a huge remission. I occasionally get a twinge now, if I overdo that leg, but it was a dramatic improvement for me.

So if you use them, try to do them for several days in a row. Not just here or there. You might find a more complete response.

I don't use the whole patch either. 1/2 is plenty for my back or feet. This way they last longer (expensive)
We have several posts about them on PN if you use the search function there.
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Old 04-30-2009, 08:38 AM #22
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mrsD, you Always have such great info! I think I will try the chart as well...Heck, even the Dr. doesn't inject where I feel the pain but at the TRIGGER points, so it makes a lot of sence.
BTW,,what plant is that a pic of? BEAUTYFUL! (Sorry, off topic)

I still wonder if anyone has ever used the Botox injections for muscle pain? If I could get the darn muscle to stop inflaming...I would think it would stop pressing on the nerves so much??
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Old 04-30-2009, 10:41 AM #23
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Quote:
Originally Posted by CRPSbe View Post
Sorry for going off-topic a bit...

How big are these SCS devices? Larger than a pacemaker? Smaller? About that size? I'd think that they would be able to at least make them as small as possible for it to be comfortable. And if they are too uncomfortable for men, then what are women supposed to do? A woman's body is smaller. That's just another thing I didn't know about SCS. I had heard about loose leads and shocks coming from the devices, but this too is a major disadvantage. Thanks for sharing!
God Bless my 2 SCS! they are about the size of a pacemaker. I am a smaller sized woman and yes they do stick out a bit. They are purposely implanted just under the skin. They do have to be changed every 7-10 years like a pacer and if they were implanted deeper... the thought makes me shudder. The benefits far outwiegh the risks for me personally. I don't worry about bumping then generators. I have one on each side of my rib cage and I sleep on my side on them. Hell I even wear a two piece bathing suit on occasion. My apin level is more important to me me than what I look like. If I look unuuasual to someone that is their problem not mine. I live my life a little lumpier but with less pain.
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Old 04-30-2009, 11:24 AM #24
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Quote:
Originally Posted by baseballfan View Post
Hi Mike,

Thanks for the welcome. Mike does the scs help you? My pain doc is talking about trying the scs for my pain in Dec 09 after it has been a year from my 3 back surg and 3 back fusion. glad the lidoderm patches help you for your scs. I hope/pray that we all can be pain free one day. mike

Kate
Regarding the size of the SCS, mine is a Metronics unit, about the size of a cigarette pack, but only about 3/8 in thick. At the time it was put in, I questioned the placement because I really don't have much padding there. The doctor and Medtronics rep assured me the "they were all installed in that spot" even though their own literature suggested the abdomen was another location that is common. About 18 months later, a different neurosurgeon looked at it and said he would have never put it there. It's really not an appearance problem. (My wife says it's hardly noticeable even though it feels like it is a huge lump.) But rather, the pressure of it poking my skin creates more pain that it is worth at times. The anchors that hold the leads into the spinal column were also not driven into the vertebrae deep enough, making another sharp point from the inside.

The SCS worked pretty well for me for a while. I had it implanted in 2003, and it was placed to hit my left lower leg and foot. I was really glad I had it. After about two years, one of the leads stopped working. The Medtronics rep could not get it going and said it would need to be repositioned when the SCS was replaced. Starting about a year later, it seemed that the SCS was more annoying than helpful. My RSD also began spreading, after 20 years, to my other leg and up into my shoulders. The SCS was not placed to address those areas.

As of now, I still have the SCS but turn it on only during the worst flares, but it really isn't doing much. I would probably get the insurance company to approve me to get another. I am still unsure if I want to try an updated model, installed by a better surgeon, or have the thing removed altogether. It would sure make flying easier than trying to explain it to TSA agents who never heard of the device.

There have been lots of discussion threads about this. Many people have been extremely satisfied. Take lots of time to research it before you plunge ahead to do this.

Mike
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Old 04-30-2009, 11:29 AM #25
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If you look on you tube or search metronics and ans they show the sizes of the scs and videos on them. I was given both from my doctors too. Of course the companies show all the positives you get from it. Everyone is different though some get relief and some have issues with it. I wish there was more concrete of course.
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Old 04-30-2009, 12:04 PM #26
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I have a newer Medtronics model SCS just got a year ago. Its only a little bigger maybe than a silver dollar. Its pretty small. Mine is cervical but my generator is planted in my rear in end near the back pocket of a jean. I am not a small skiiny perosn about average but I can feel the implant. It doesnt really bother me. What bothers me is that my RSD spread to that area & other areas in my back when I had suregry for the implant. I would not want to go without my SCS. It is a great deal of help. I would check out the differnt websites for the companies it gives the dimensions of the devices & shows pictures.
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Old 05-08-2009, 07:16 PM #27
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I tried the Lidoderm patches and it hurt too bad to put them on. There was no pain relief, so I quit using them.
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Old 05-09-2009, 09:24 AM #28
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Quote:
Originally Posted by bassman View Post
Regarding the size of the SCS, mine is a Metronics unit, about the size of a cigarette pack, but only about 3/8 in thick. At the time it was put in, I questioned the placement because I really don't have much padding there. The doctor and Medtronics rep assured me the "they were all installed in that spot" even though their own literature suggested the abdomen was another location that is common. About 18 months later, a different neurosurgeon looked at it and said he would have never put it there. It's really not an appearance problem. (My wife says it's hardly noticeable even though it feels like it is a huge lump.) But rather, the pressure of it poking my skin creates more pain that it is worth at times. The anchors that hold the leads into the spinal column were also not driven into the vertebrae deep enough, making another sharp point from the inside.

The SCS worked pretty well for me for a while. I had it implanted in 2003, and it was placed to hit my left lower leg and foot. I was really glad I had it. After about two years, one of the leads stopped working. The Medtronics rep could not get it going and said it would need to be repositioned when the SCS was replaced. Starting about a year later, it seemed that the SCS was more annoying than helpful. My RSD also began spreading, after 20 years, to my other leg and up into my shoulders. The SCS was not placed to address those areas.

As of now, I still have the SCS but turn it on only during the worst flares, but it really isn't doing much. I would probably get the insurance company to approve me to get another. I am still unsure if I want to try an updated model, installed by a better surgeon, or have the thing removed altogether. It would sure make flying easier than trying to explain it to TSA agents who never heard of the device.

There have been lots of discussion threads about this. Many people have been extremely satisfied. Take lots of time to research it before you plunge ahead to do this.

Mike
Hi Mike,
Reed also wonders sometimes if it was worth it. He's having more pain in his back recently. It also swells..not like an infection, and not exactly where the battery or leads are. I sometimes wonder if he's not experiencing spreading. I sure hope not!
His battery is small, but he has no rump.. so it does stick out a bit. His leads, where they looped them to help hold them in place, stick out too, and that's where alot of his pain is coming from. He says it pinches and his back burns. The PM doc is talking about revision if they can't get a better re-programming. I'm not sure Reed will go through that again. He got tremendous relief from the SCS at first, but once those leads moved the tiniest bit, he got hardly anything, and it's been reprogrammed 3 times with little improvement. anyway, hope things are well for you and your family.
hugs to all!
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Old 05-09-2009, 09:08 PM #29
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Quote:
Originally Posted by Rita View Post
Hi Mike,
Reed also wonders sometimes if it was worth it. He's having more pain in his back recently. It also swells..not like an infection, and not exactly where the battery or leads are. I sometimes wonder if he's not experiencing spreading. I sure hope not!
His battery is small, but he has no rump.. so it does stick out a bit. His leads, where they looped them to help hold them in place, stick out too, and that's where alot of his pain is coming from. He says it pinches and his back burns. The PM doc is talking about revision if they can't get a better re-programming. I'm not sure Reed will go through that again. He got tremendous relief from the SCS at first, but once those leads moved the tiniest bit, he got hardly anything, and it's been reprogrammed 3 times with little improvement. anyway, hope things are well for you and your family.
hugs to all!


Rita,
on that subject, (I have No experience with any kind of pump), but, I wonder weather the Lidocaine patch, (I've never used a whole one, I cut them to fit),
I wonder, if it would help Reed, if applied over the area where the pump is?
I'd bet it would...
Some "padding" and local pain relief".
I hope he asks his doc!

Pete
asb

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Old 05-10-2009, 09:35 AM #30
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Hi All,

I was diagnosised of having RSD on my left foot 4/8/09. My pain doc is going to do a sympathetic nerve block, has this block helped anyone who has RSD. Also through research I have read that lidoderm patches help RSD. I have been having my husband put one patch over my toes and one patch over the rest of my foot. Hurt likes h**l for him to touch my foot and have the patches on my foot, but after about an hour the pain seems to be better. Has this helped anyone. Thanks. Have a nice day.

Kate
Hi Kate I am also new to to RSD have it since 7/15/07,started in my lft foot due to mutlpiple injuries then surgr and went into my upper body feb of 08.yes i have had never blks and loved them so much,but my copayment got to be much so i saw another PD and he said lets try epidurals they will work the same and help with my back, but what works for one might not work for the other,as far as patches i love the flector patch it gives me more relif in my hands,due to med in the patch itself, Good Luck Let me know how u make out.
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