HI....Well I have had a couple of them...... and as for me... I found them painful...VERY.
I had one Doctor that I was almost ready to hit... HE really made it painfull.
I don't know about others, but I do not think they really help in Dx'ing RSD, and I don't really think NCS's pose a threat to anyone that has RSD, "AS" long as the Doctor giving it knows what he is doing... They do stick little pins in you......
I had one done before being diagnosed with RSD. It was very painful, but I don't know that if it could make RSD worse or spread. Mine was 2 parts. The first part was with electrodes that shocked me. The 2nd part was with pins inserted into my legs. They made me tighten muscles after placing the pins.
As far as using it to diagnose RSD, I think that drs want to see if there is nerve damage that would show up in the test results. My RSD is without any known nerve damage so my test did not show any negative results.
I have a friend with seveer rsd in her left arm shoulder..it is unusable but yet with the nerve study it shows nothing sinificant..I just have a hard time understanding why or how it wouldnt show up..
I myself have battled nerve damage and for 9 yrs several nerve test I finally started having signs show up..it just make nno sence
05/19/2011 09:56 PM
Posts: 23 Member
My husband has rsp/crps II in his left leg from a car accident that we got into. They did a nerve test as well on him where they would take like and acupuncture needle and "throw" it at his "bad" leg. I'm not to sure how the measured what was wrong but they said that it didnt show any nerve damage. I'm with you on that about it not making any sense. I mean I understand how you cant really measure pain but at the same time ...... Sorry that wasn't much help but i just wanted to let you know your not thinking this alone. I'm hoping we will hear something maybe we could us. Good luck and K.I.T.
05/20/2011 12:58 AM
Posts: 185 Member
It seems the NCS is more to rule out larger nerve damage vs. the smaller nerves, which I don't believe shows up on a NCS. The smaller nerve damage can show up on a biopsy, but from what I've read, a muscle biopsy makes a NCS seem like a picnic & has many ways it can show up as a false negative, depending on the location, depth & so on of the biopsy.
Basically, nerve conduction studies are designed to show larger nerve damage, so seems like the doc is perhaps looking for another cause for what is going on.
The best way to find out the reason for the study is to ask the doctor that ordered &/or is conducting the study. That way there is no speculation as to what he or she is looking for.
So, Broken, just because the NCS didn't "show nerve damage" only really, if I understand correctly, means that the larger nerves are not involved (or at least not yet if a condition is degenerative &/or progressive & later starts affecting the larger nerves.)
A nerve conduction study can thus be negative, even if there is no function, or even when there is significant nerve damage that has not affected the gross (or larger) nerves & only affects the small fiber nerves. To put it simply, standard electrophysiological tests for nerve injury do not measure nor detect small-fiber nerve damage or function.
There are some experimental tests, such as Intra-epidermal Nerve Fiber Density testing, muscle/small nerve biopsy & so on that are still a long way from becoming reliable standard clinical practice, so it will likely be many years before we see a reliable testing method that shows small nerve damage definitively. If it is found on a biopsy, it is clearly there, if it does not, it may mean it was simply missed (biopsy taken in a lesser or non-affected area, an area without casual protein deposits etc. in the sample, improperly handled samples and other not very well understood false negatives primarily, as well as false positives (more likely in a mishandled sample) and other variables not yet well understood can all miss damage.
I think the focus at this point is primarily on pain control, controlling the causal factors (if they can be identified) thus reduction of further nerve damage, if possible.
This is well documented in medical literature. You might look up small fiber neuropathology online or for a very good overview, this article explains is a good overview...
A NCS or "Nerve Conduction Study" is clearly not a definitive test for weather there is nerve damage or not. It is simply a tool to look at larger nerve function - nothing more.
Perhaps this will help clear this up a bit.
Until we have a better understanding of the nervous system & better ways to test for (and understand) nerve damage, a NCS can be helpful for a doctor to understand what may be causing nerve dysfunction (or damage) and thus pain, in conjunction with many other tests & communication between pt. & physician about the character of the pain, possible causes, etc. are all important to discover the best course of treatment or simply controlling the pain & reduction or halting of any progressive/degenerative issues.
NCS is only one tool of many to try to understand what is going on. Lab tests, including metabolic testing, genetics, microbial testing (current &/or a history of certain viral &/or bacterial infections, blood glucose control and far more) as well as the character of the dysfunction, pain, medical history & responses to medications and other factors are all important in the overall picture and working on a successful treatment plan.
Record keeping, being comfortable with your doctor & especially communication is also very important is development of a successful treatment plan. Being "comfortable" with your doctors may mean you simply understand one another and can work together with each other. For instance, I had a severe injury years ago that required immediate surgery & another a few days later. Although I didn't care for the bedside manner of my surgeon, I knew I was in the best hands & care I could be in for the type of injury I had and was more than happy that he was the main surgeon on the team working on me. I also understood that in trauma surgery, it was likely in both his and my best interest that he keep emotionally detached from the task at hand. In a "normal" situation, I'd probably look at him as being cold and insensitive. He didn't refer to me by name... I was the case with a very severe injury and complex surgery, which rubbed me the wrong way (especially under anesthesia/sedation between surgeries - yep, we had some issues between them - especially when he talked to the students as though I didn't exist & especially when he talked to other doctors about a possible amputation... add that to a severely injured person sedated & on mind-altering drugs & yes, we had some issues. I tossed a cup of water at him as he was talking to others about possibly removing my hand as if I wasn't there. I'd never thrown anything at anyone like that in my entire life - not before then & not since - clearly the meds had me agitated & weren't helping the situation, at least I didn't think so at the time), yet of all the surgeons that could have been on-call that day, I trusted him, knowing that he was my best shot at coming out of those surgeries in one piece and not loosing a limb. Hearing that removing my hand was a possibility and his talking to other doctors as if I was a piece of meat on a slab was not what I needed emotionally at the time. In retrospect, he may not have realized I was aware of everything up to that point. I think after that, my meds were bumped up & to this day, I don't recall most of the rest of my week+-long stay. If he had just talked TO me & not about me to others he might have been able to spare some wet surgical greens & a paper cup hitting him on the shoulder, yet I DO understand that this is how he coped with his job & may be why he was such a skilled surgeon. He needed to detach in order to get his job done. If I'd had the same injury & could have chosen a surgeon, he would have been my 1st choice, as I knew his reputation and he was the best surgeon available where I lived & quite possibly one of the best in the western US for the injury I had.
I suppose the moral of this is trust and skill is critical. We have to understand that doctors are human too and some are just as frustrated (if not more so) as we are. Some burn out and don't handle that type of responsibility well, some are not as skilled.
We have to find the best skilled *medical* care available - not necessarily the doctor with the best bedside manner, although that can go a LONG way when it comes to pain. Bedside manner & encouragement are very important when it comes to PT & aftercare with RSD, ongoing care that may not be ending, so we need a doctor (or team of them) that can do their job & because RSD is a long-term (if not lifetime) series of surgeries, procedures, pain, etc., we need a doctor who we can trust AND that has a good bedside manner. One that doesn't let the chronic nature of this condition, long-term care and our successes & those times when the grind is getting to us, can be understanding without passing us on as a "difficult case" or worse, a "difficult patient". We need doctors we can work with through both the good times & the not so good times. Our doctors for this chronic, difficult-to-treat, chronic condition, need to understand that although they may be frustrated with some treatments not working, that they understand the nature of chronic pain disorders and understand that we are living through it.
The difference is that emergency care & surgery is NOT the same beast is chronic pain conditions that may not respond to treatment. Doctors that treat RSD/CRPS need to be there through thick & thin, through our good days & our not so good days. We too need to understand that our doctors are human as well and have their own lives, they don't know everything & there is a LOT more research that needs to be done - not only in general, but with each one of us, we may go through many tests & treatments before we together find something that works.
What "works" with today's knowledge of nerve dysfunction/damage (or more accurately, lack of knowledge) may vary widely from one person to another, and new treatments may come along that we need to decide if we are willing to give it a try to further the medical community's knowledge of how to test & treat this "beast" called RSD or CRPS, or if we will pass on a treatment. We have to be able to make those decisions and feel confident that we are doing the right thing for ourselves, yet also realize that in research there are no failures. Every successful treatment AND unsuccessful treatment leads to more knowledge, so the outcomes are ALL successes, as long as we are working together towards finding answers and learning.
Ironically, the near amputation injury I had years ago is not the limb primarily affected by the RSD/CRPS in me, although I was treated with Ketamine in between and after those surgeries to repair my wrist and hand, which, with what I know now may have saved me from even more pain & possibly RSD/CRPS in my hand, wrist & shoulder.
At this point, even though nerve conduction studies are very painful, and are usually negative in RSD, there might be a stumble onto a new way of testing or a progression of damage, which may not be good news for our pain levels or function, it may hold a part of the key to unlocking what this RSD/CRPS stuff really is and how it can be better treated for us and those that follow us.
As I said before, in research, there are no failures, only more information to go on and perhaps a cure some day. WE have to work with our doctors to decide what we are willing to risk, educate ourselves on every procedure &/or medication we decide to go through AND be willing to live with the outcome and trust that our doctor(s) will also educate us and let us balance the risks and decide weather or not we are willing to take those risks.
Giving feedback to our doctors is important, not only for us, but as well for those who follow us.
Many, if not most medical breakthroughs are stumbled upon by trying something new, or an old thing in a new way. Each one of us has to make an *educated* decision as to weather we are willing to take a medication, have a procedure or surgery. Every medication, procedure and treatment has its risks - so does doing nothing (especially if the nerve damage is progressive, and as with hearing, we may loose function "toughing it out" through the pain.)
Nerve conduction studies can be (but aren't always) VERY painful, yet if having one gives our doctors another piece of this puzzle, then it *may be* worth getting one, or even a number of these over the years.
One doctor doing a NCS, a procedure a surgery or a medication (or medications) may decide to try something slightly different, or notice very subtle differences, changes or a set of reactions with other medications or treatments that might open up new treatments or even a cure to this da**ed stuff. It may be a med student, or a seasoned doctor that even makes a slight alteration in a procedure, surgery, lab test, or does something differently, and notices, that might just lead to a cure.
I think we'd ALL be happy with that! I feel like I've aged 10 years or more in the last year & a half I've had this stuff.
Sorry for the LONG post, but it needed to be said!
05/20/2011 08:16 AM
Posts: 2023 VIP Member
My Electromyography and nerve tests were extremely painful. When the prong type thing was pushed behind my knees instant tears. When the tiny needle was used that part wasn't so bad.
My results weren't negative or positive, but inconclusive. I was referred for additional testing at a center in San Francisco for further study but WC wouldn't pay for it.
It was after those tests that my Dystonia started. Whether there is any relation to it from the study is unknown, yet prior to the tests I didn't have it or any of the symptoms.
Here years later it's getting extremely out of control.
All in all it just wasn't a good experience for me.
07/12/2011 09:20 AM
Posts: 9 Member
Hi Craig, Last year I had a EMG study done before I was diagnosed with CRPS that was so painful I felt that I had been electrocuted. It was before my hand surgery. I often wonder if it was the beginning of the RSD even before the surgery. I didn't go to sleep until 4 am that morning because of the nerves in my body tweeking involuntarily. I had the same test done subsequently by another neurologist without pain.
The 1st one was done by a workman's comp hired gun. They are sending me to that doctor again. I am scared. What is your opnion? How many of the same test do they need? Thanks, Rose
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