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Thread: "Normal" for "shocks", nerve "burns", changing on sides, questions ??

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  1. #1

    "Normal" for "shocks", nerve "burns", changing on sides, questions ??

    I figured, unfortunatly by best bet is to ask those in the "know" these questions.
    I think it was C5 or C6 that was "injured" but I have regained a lot more then many . It was not C1-C2 where I had the actual injury. My left side was non-functional.
    I am having so many issues going on now. I am sure some is because of the weather, I don't know how those of you "north" can manage it because it is pretty bad here. I do SO much better in the summer.
    Well, I seen the Dr. again today and he wrote in my chart "neuropathy", nerve injury from SCI. He switched me to Lyrica and a few others to try as the Baclofen and Neurontin, screwed with me way too much and I could not function. I have a hard enough time with balance, memory, visual, walking, etc. as it is without that .
    He mentioned seeing a pain specialist but knows I am without ins right now.
    He is confused with that as SSI sent him information stating I can not work, duh. So have all of my other Drs. Another story.

    So, I have the constant burning on both sides now. It feels like bone pain, hot oil then light with a match, ants crawling all over me biting. Weird to describe but I guess more "normal" with SCI ? I get the "shocks" a whole bunch too and I guess you kind of in a strange way, "get use to it". Really, really sucks!! It seems to be getting worse.
    Recently though, the "shocks" went to my right also. Out of the blue my arm felt like the bone had been smashed, I was in tears . A few seconds later, it did the same thing. This time I fell backwards it hurt so bad. I was at dh's work and he seen this and was concerned but it did not last very long. Well, it did similar a day or so later in my right leg.
    I have had these issues with my left side and when it does this my whole body tends to "jerk". It really is very shocking and hard to deal with because I see me overall as "ok" because I can walk. Probably that is part of my problem.

    This is very confusing to me because I "look" AB and am not. I avoid most things that make it too obvious but there I guess is alot more that shows then I want to admit.
    I just know this is not something I would wish on my worst enemy then again, maybe if more did they will see the struggles that "we" face and have to deal with on a daily basis.
    Any others who can chime in on this and offer any ideas, suggestions, recomendations, or advice?

  2. #2
    so ,what exactly was injured and how?it would appear that you have nerve injury on both sides as well as the spinal cord injury itself to deal with.alot of us only have one sided type symptoms to a certain degree,but yours do appear to have affected both.i have different things on different sides from the more specific types of damage,mostly the tract damage within the cord itself with affectation of the motor nerves which were hit and lost but only one came back during my surgery.

    how long ago was your actual injury?the thing i found with spinal cord injury is that from what i read on this,the changes that occur in the cord itself,and these are actual chemical changes that just happen as a consequence of SCI,can take about one year to fully show themselves,but the changes appear to keep on happening.no two days in a row are the exact same for me anymore,with regards to what i feel and how my pain actually is.something is always different.this is also going on right now with 'mary on wheels" if you read thru her thread, she is dealing with alot of the same thing you and i currently are.

    it wouldn't hurt you tho to possibly get an updated MRI,but without ins,that can be difficult.you mentioned ssi,are you on that or disability right now?you can qualify with ssi right away for medicare,but for some idiotic reason,if you are awarded only disability,you have to wait two flippin years to obtain it.this would at least help with costs,alot.you could just be having degeneration type changes within your c spine.i have this going on as well as the SCI.my primary called my c spine a "trainwreck' and this was way before my spinal cord surgery took place.its just kinda messy in there.

    what you have described could possibly be just stemming from your actual c spine and not the sci itself,you know what i mean?something could very well be compressiong or somehow affecting the c spine nerves up there.if you have suffered a spinal cord injury,you will usually also have some sort of traumatic type of c spine injury too.it all depends on what your mechanism of injury was.usually the stronger type jolts,definitely not always,but usually,they stem more from a direct nerve than the more vague type of SCI type pain.i do get those jolts in my central pain and RSD areas but they are different than whati feel i know is actually stemmming from my structural c spine problems.

    the whether is killing me too right now.in the summer,the heat,with the high dew points we get here in MN are bad for my RSD.now this freakin cold we are having with this mornings temp at a lovely minus fifteen,well needless to say,i have been in my house hibernating since thursday.the extreme cold,and this really is the first winter where this cold has really been here,more like our normal winters?this crap is seriously killing both of my legs with increased spasticity up to a level i have never ever felt before this,ever.my legs are constantly just plain 'tight'all the time no matter what i do here.i had my injury happen in 03,and this is the very first winter that we have actually had a true MN winter with the sub zero temps and wind chills up to minus 40.that was this morning,yuck!i think the weather seriously affects alot of us in a very adverse way.espescially when it isn't the norm and new to our bodies in the new injury way.i do hope you can get ins and find some answers here soon.seeing a pain doc really would help alot too.i know i also have had some really nasty reactions from lyrica,cymbalta and other anti siezures that never used to bother me,i really think the lyrica altered something inside my brain.things haven't "felt' right inside my head ever since i was on it and had to go off because of side effects.so what meds are you currently taking right now,on a daily basis?marcia

  3. #3
    Ok, I am trying this again. I somehow click post and I am logged out .



    You are probably right about needing another MRI. I have had so many, for sometime I was getting them daily to moniter any changes. I avoid them now as much as I can. I will likely need one anyway when I see other specialist to eval. me and determine what IS going on.
    I sent the recent ones to my 2nd neuro surgeon and he was not pleased with the quality(he wonder why we chose to NOT let # 1 work on me again, oh he is local that is right) but without seeing me, not a lot he can do. Unfortunatly, he is over 200 miles away and really not likely how/what I need to see. His focus was on bolting my neck back together .

    I could only apply for SSI, SAHM mom for 12 yrs . I was able to request an admin. appeal this time. Which, I have not heard anything so far. I have an att. and someone from the house of reps. in also. Heck, everyone INCLUDING the chief of the DDA(may be DDS, not sure) all say I am as good a I CAN get, duh. Ya, think I have been working so hard to regain my life for nothing? It goes to a dr. though to determine whether I am or not. Well, I have been looking just for the heck of it. I am told too much of a liability(course the ADA, worries some to "say" too much ) and I can not go back to employment I had nor back to schooling for RN.
    Just for the fun I have applied for private ins. I have been told already "IF" they cover me, they will put in to "exclude" anything related to my cervical(or as the guy said, cervix , he said we have cervix in our neck . And I thought I only had one ) or anything related to my SCI(well ya gonna cover anything ). We shall see what they have to say after they review my medical and how high in such a short period. If, they won't cover me, I will try another, just to "prove" points and actually do my job at looking into all the avenues out there! It is pretty frustrating and I am sure everyone here can testify how "painful" the hassle is. Heck, can anyone here say they "asked" for this to happen and where prepared?
    I had a "hang man's" fracture, C2. Course, I had no cord involvement there not to say the nerves where not affected. It was clearly C5 or 6 where the cord was "pinched", pulled, circulation shut down, take your pick of "terms" . The large nerve fibers(I think that is what they are called) are well, been "agitated".
    "Mother Nature" works and makes me hurt/burn more, I guess common from reading up on it. Cold makes me hurt more also. I can tolerate the summer so much better but I have a hard time with the heat so, I have to be careful.
    I am really only on mobic and the lyrica now(I decided sometime ago, I missed to much of life and never want to get back to that point). The lyrica has just been increased today. I have only been on it for 7 days so we'll see how it works. I do not have to changes I had to neurontin, I don't think. I have been having some changes before the med. so, I don't think it is from the lyrica. I just took the "new" dosage and feel a little "off". It may be just tired or overwhelming day though.
    I guess I am more venting to those who can "really" understand as no one I am around can say, well, I have been paralyzed also or yeah, my neck has been broke or have had fractures in take your pick.

    I did a pilates/stretch class today and yeah, you can see an awful lot of the "mobilty/motor/movement troubles I am left with. It is very, very frustrating.

  4. #4
    mom242, I have to say the way you describe your pain is fairly classic for neuropathic pain symptoms. It's a real challenge to describe a sensation to someone who's never experienced it, the vocabulary just doesn't exist. People talk about how hard it is to describe what salt taste like and that's something everyone has experienced, so it's infinitely harder to do this.

    MRIs are subject to the quality of the equipment and even more to the skill of the tech. I had one on my shoulder this week. The next day the docs office called to say they didn't see any damage and I felt like, duh!, I knew they couldn't get clear images on two of the scans because I was congested and my breathing caused enough movement to throw it off. I just couldn't hold my breath for the 5 and 10 minute scans. You know how it goes, just because their scan doesn't show a problem doesn't mean it isn't there. Most imaging studies can be used to rule something in, but not to definitively rule something out.

    If your doc isn't happen with your MRI and you're willing, ask him if he has a preference for where you might get a better scan. I wish you the best of luck with everything you have going on.

  5. #5
    David is right. Everything you have mentioned is classic. You have left out a few things, but then I suspect even you forget to mention a lot of the stuff. It gets to where you only mention the most obnoxious features. If you can find me anyone anywhere who has had central pain diagnosed by MRI, I would like to see it. The entire spinothalamic tract is smaller than the resolution power of MRI. People injured sufficiently to show some lesion on MRI often have too much loss to get central pain, so it can sometimes cause more confusion than it clears up. All an MRI can do is give a general idea of the magnitude of cord lesions. Radiologists are often unimpressed with minor cord DISPLACEMENT, so long as the thecal sac is not markedly impinged. However, in animals there is stuff in the literature that cord displacement can cause central pain. Finally, reread Dr. Young's comment to the lady who had a tear in the dura. You will note that central pain does not always have to have a cause. Sometimes it just happens. That is a very significant point that I wish more doctors were aware of. You are at the right place, it is just that central pain is not solved yet, so you are sure to get some uncertain stuff. Maybe I am misquoting Dr. Young because CP does have a cause, but much neuropathic pain is hard to attribute to a specific lesion. We are not yet at the stage chemically where we can say for sure, THIS is what causes central pain. Furthermore, the variety of pains to me says that eventually the causes will be plural, ie. THESE are the chemical changes that can lead to central pain. MRI costs a lot, but it doesn't necessarily tell you a lot. I am a bit spastic and the thump of the magnet makes me jump. I struggle mightily to hold still but i know I am messing up the study. With really powerful magnets and very current software you can get images over a short time, say a rapid access of one minute and a half. However, most places are still getting this. The ten minute study for those who cannot hold still usually indicates a stone age machine, with paleolithic software. Nearly all magnets are 1.5 Tesla by now, but it costs a lot to buy the upgrade software and there are few radiologists who really know how to exploit it. I have been amazed at how the quality varies even at the same institution. I learned they keep using old machines even when new ones are there. It is the luck of the draw the day you go in.
    Last edited by dejerine; 02-11-2007 at 02:49 AM.

  6. #6
    Quote Originally Posted by dejerine
    The ten minute study for those who cannot hold still usually indicates a stone age machine, with paleolithic software. Nearly all magnets are 1.5 Tesla by now, but it costs a lot to buy the upgrade software and there are few radiologists who really know how to exploit it. I have been amazed at how the quality varies even at the same institution. I learned they keep using old machines even when new ones are there. It is the luck of the draw the day you go in.
    I go back to see the doctor who ordered the MRI in the morning. Actually it was an arthrogram, an MRI with contrast. I was in that machine for over an hour by the time they re-attempted the 3 images, so snug I had the cylinder pressing on both shoulders and arms. This at Barnes, supposedly one of the most advanced centers in the US with a 5-floor radiology department. At least I'll be able to get another cortisone shot, but I'd really like to find another approach than an annual steriod injection.

  7. #7
    you cannot realistically Dx central pain by MRI,BUT what you CAN do with an MRI,if you have copies of this at home like i do,is approximate the area of an actual tract,if yours actually shows a lesion or specific damage.

    this is how i was able to Dx myself with central pain syndrome which was indeed confirmed by my NS later on.

    see,i was posting alot on this angioma alliance website prior and after my spinal cord surgery,they were extremely helpful and knowledgeable and i was terrified of having this SOB actually removed from within my cord since i was told i would definitely have damage to my fine motor and my legs.big freakin decision there.the lessor of the two evils crap?anyways,after my surgery i was still left with that hidious stinging and burning that was like so over the top it was just totally overwhelming me.one day while i was on that site,a woman was asking a question about her mom and this horrid stinging burning pain she was having after her cavernoma had also been removed from within her cord,that post really caught my attention.the moderator there who actually has a daughter with one of the arterial forms of vascular malformations inside her brain(poor little girl)responded with an explanation of possible central pain syndrome.well that was the very first time i had ever heard of that but man did it ever sound like what i was dealing with.after doing a bit of detective work and finding out about the spinothalamic tract being the culprit,i actually found a site that showed all the spinal tracts on it and the type of pic they showed was the exact same as one of the MRI slice pics? so i went to one of my MRIs that showed the largest area of my lesion and then just compared that to the tracts and how they were within that same slice looking pic,and lo and behold,that little bastard was smack in the middle of my thalamic tract.then on my next NS follow up appt,i asked him right out if the cav actually was in my thalmic tract and he said yes it was.then i asked him if he thought my type of pain was actually central,and again,he said yes.sooo i got my answers there.but there is also another wonderful condition you can get from just having that same thalamic tract damage called brown sequard syndrome?this wonder makes it so you just cannot actually feel hot cold or surface pain.this also,because of the damage to the pain pathway that also runs thru this tract,is now "deranging" every pain signal that passes thru it,it can also cause me delayed pain,even up to two full days.i also have this on my R side from my ,or under my right breast on down thru the tips of my toes.very bizarre.i can feel "inner' pain that is genrated from the inside,but it doesn't feel the same,mostly burning with a tingleing crap in it?but you could take a needle and jab it into my stomach and all i would feel is the sensation of that needle but absolutely no pain what so ever.tho i can still feel even really light touch.this syndrome is by far the hardest one to try and relate to people since i still have that very fine sense of touch,just cannot feel hot cold or surface pain or pain from the outside in.

    if you actually have damage that you can see on an MRI slice pic,just look up spinal tracts til you find one that has that same slice pic with the tracts labled and layed out there and compare where your actual damage is and where it falls within the spinal tracts.this would at least give you some idea just how close your damage is to the spinothalamic tract.you do actually have two spinothalamic tracts which i just recently found out.one is the lateral(this is where my damage is) and there is also an anterior one.if you can see damage on your MRI,you should be able to actually do this too.at least it would rule it in or out as a possibility and that in itself helps to at least identify what in the hell you have going on ya know?good luck,marcia

  8. #8
    Marcia, Hi!

    You are one motivated person. I love you and know you will read this in the spirit it is given, of admiration for your determination and smarts.

    I feel it is worth repeating what Dr. Young said; namely, that central pain doesn't always have to have a cause. I mention this because the medical history is sufficient to diagnose central pain and we do NOT need an MRI to validate us. Burning pain in someone with injury to the CNS and that is all it takes.

    The MRI absolute is a cruel trick played by some radiologists who pretend to be the final answer. MRI gatekeeping is a favorite ploy by disability carriers, where no MRI findings equals NO compensation. So there is a very great threat to the poor soul who has terrible CP but can't find it on the MRI. As Wise said, "sometimes neuropathic pain just happens". That is the overriding truth.

    There really is no spinothalamic tract, as such, and there are SEVEN bundles. Think of telephone wires and you get a picture of the anatomic reality. The reason for this is that the nerve bundles of the ST tract wind around and interposition with other tracts. The ST tract should be thought of as a zone. Even so, it is very small, perhaps 1/2mm at most. If you can find me a radiologist who will claim to see EITHER the lateral or the anterior ST tract on MRI I will eat my hat (not really, my cord injury impairs my swallowing muscles of the pharynx--how it got that freaking high I don't know but that is what the neurosurgeon tells me--he thinks discoordination at the thalamus). Damage in an area COULD mean CP, or it could mean the other nerve tracts are so damaged that the big white blob obliterates subtle changes that might be capable of visualization on MRI if the resolution were super. In animals, even slight displacement of the cord, WITHOUT ANY MRI CHANGES AT ALL, can predictably produce central pain animals. Blood flow is very tenuous in the spinal cord with many people unable even to turn the neck without compromising cervical spinal blood flow to a measurable degree, so displacement could easily compress small vessels. These incidents may be among the cases of CP which "just happen". CNS arteries are notoriously prone to vasospasm and so circulation and so getting the blood in and then getting it out so circulation can occur are big issues.

    Resolution of the MRI is still no better than 0.5 MM, but only if you can hold still forever, so really about 1mm. So you could have damage to the ST tract, or one of its little bundles, and no sign on radiology and then where would you be if we turn diagnosis of CP over to the radiologist. Radiologists have VERY LITTLE experience with clinical medicine so oftentimes they don't know that they don't know.

    That, I believe, is one reason Dr. Young said CP doesn't always have to have a cause. There is another test, an electrophysiologic one, which is pretty good at picking up spinal cord damage if it is present in the posterior columns. If a CP patient has lancinating pains, there is a high likelihood somatosensory evoked potential test will show a latency in the time for signal to pass through the posterior columns. This will be positive in many cases where MRI is not.

    So, as impressive as the big magnets are, and as much as the MRI costs. and as often as medical TV shows mention MRI, they are performed by radiologists who do not know clinical medicine, and must be relied on by clinicians who do not know the subtleties of sequencing and image acquisition. It would be nice for the clinician and the radiologist to argue a bit about these matters, but there is not time.

    In fact, in this era of managed care, the radiologist does not take the MRI, does not put the MRI films up on the viewer, does not take them down and does not type the interpretation individually, for the most part. They will not attend your surgery to see if they were right.

    Typically, the radiologist has prerecorded an interpretation on voice recognition which he numbers. He or she looks at the film, which the assistant has handed to him on a silver platter, picks up the phone and says MRI dictation #3, or whatever, and adds two or three sentences. It is SO efficient!. Out comes a three page interpretation full of fluff, full of "no obvious", "no significant" and "cannot rule out" which are really CYA steps, but can damn the patient to insurance hell, or implicate the clinician alone if anything legal shows up later. My favorite for a negative mammogram was "No obvious signs of malignancy, but cannot rule it out". Equivocation is the essence of radiology interpretations.

    Next, if the patient hollers, the clinician calls up the radiologist to ask questions. This is the real interface and the mark of both a good clinician and a good radiologist, the willingness to discuss. Because of this, never asssume your CP has been fleshed out simply because you have had an MRI. I love the good radiologists on CP, but I think there are only a handful of these geniuses.

    Inteventional radiologists are much more clinical by nature and if they have training in neuroradiology as most do, they can be of great help. provided they have read the CP literature. Since pain literature is so imposing, it makes most would be newbies very intimidated so they yield to the pain clinic docs, who haven't much specific knowledge about nuclei in the thalamus or what the seven spinothalamics do or especially where they are. Most radiologists don't even know the term CP exists. Without TIME for feedback, how does the radiologist ever know he/she is wrong and how do they learn.

    The solution will only come when every neuroradiologist has a PhD assistant on pain chemistry; OR when there is a subspecialty of pain imaging, which could happen now that functional MRI is widespread and even PET/SPECT is available at research institutions. Managed care is not going to pay for this at the present time. Sorry. When you are sick with pain the last thing you feel like doing is engaging your doctor in a discussion about MRI, but there is no way out of it if you want to keep things in perspective. Images have always had the aura of courtly/judicial authority for the public, but in the end, the clinician must make the call.
    Last edited by dejerine; 02-14-2007 at 04:35 AM.

  9. #9
    Thanks for the info D,if there are only seven 'bundles' how come the pictures they show of the layout of the tracts show particular areas of like 20 different areas called tracts then?im just a bit confused(nothing new there?)that just dosen't make any sense to me.could you explain?if you look up spinal tracts,you will get one hge list of them all spread out within that 'sliced layout pic?believe me, I KNOW that MRI is a very very inaccurate Dx tool at best.i have had a grand total of 16 of them done between my c spine and my knee.some rads don't know squat about exactly what it is they are even seeing.thats why any good neuro wants to see your actual hard films.the best scan i ever had was a new one called a 3 tesla scan?this one is supposedly three times the magnatism of the regular one.any interpretation of any films is all dependant onthe overall knowledge and experience of the rad who is reading it,i have had some really good reads on the same exact area and others that really don't mention much or cannot even interpret with any good knowledge just what in the heck is going on within a particular area,when they had been on other MRIs that were done by another rad.

    i think you missed where i stated that if you actually can see a lesion or real damage on an MRI,you can at least possibly narrow down where your damage is at.after my lesion was removed,you now cannot see any trace on MRI just where it was,except for the very tiny ten percent that is still there now that they couldn't get.if i implied that you can only have neuro pain from something that is found on an MRI,i KNOW that is not possible,believe me,i know.there is no explanation (except some nerve damage)for some of my neuro pain,none,it is just there taking up space and driving me insane.i didn;t mean to imply that at all D,if it came out that way,i am sorry,i don't want to give the wrong impression or idea to someone that they have to see damage on an MRI in order to feel the uglyness of central or any other neuro pain,really.i do know better.all i was saying is i was able to narrow down my particular area because i could see the area effected on my MRI thats all.and i totally fit with central pain and brown sequard.brown sequard is caused by damage to the spinothalamic tract.i just had an advantage that i could actually see where they had to remove my cav,thats all.

    i still don't quite understand the seven bundle thing tho.why would they state there are so many tracts when they aren't there?could you explain that one in a bit more detail for me?i mean if you look up spinal tracts,there just are way more than seven,thats all.and they show approximately where they are located thruout the cord as well.my neurosurgeon who used to be the head of neurosurgey at the university of MN(with 30 some odd years of experience) agreed with me that my thalamic tract was most definitely damaged,just based on all my symptoms at that time,its gotten much worse over the past few years.moved on to new places and new agonizing heights.

    i know you are just being helpful D and i would never take anything you said to me in any other way other than the way you intended,believe me,your knowledge and experince have helped me tons to try and understand this ongoing nightmare,but i think you got the wrong impression other than what I was trying to say here.i would never tell anyone that they could only have damage and the pain that can come at anytime anywhere, if they saw it on an MRI,i really do know better than that(this site alone has taught me that).it was just the way that I was able to figure out what areas were most affected in my case.if you can actually see on an MRI where a particular lesion is,you can deduce the general area affected/possibly damaged when it is removed,thats all i was trying to say,i guess it came out wrong or something?sorry if i confused anyone,i usually just do that to myself and my husband.Marcia

  10. #10

    electric Shock torture

    Well, 2nd try.... message got erased. I am 33 and have had extreme pain for 17 yrs. I got hit by drunk while riding horse. Back then Drs. thought it was great that I could feel anything ....I could of killed them. Then Drs. said it was in my HEAD. Again could of killed them. I have recently been diagnosed w/ what I"ve said all along. Nerve damage. Neuralgia. They prescribed anti-depressants...didnt work. They prescribed Neurotin and I end up screaming w/ both legs because my legs swell and that hurts just as bad. So they put me on furosimide too. That helps but Im off the drugs again because I'd rather 1 leg hurt than 2. I was really hoping to find something else to fix the pain but what I've read so far is depressing. (gonna need anti-depressants) I can't stand this pain anymore. It is getting where I can't function let alone do things that I enjoy. Anyone out there w/ suggestions Thanks, Enetsala

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