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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


believe me laura i KNOW desperation as i think we all kind of do here. but what i am wondering most of all is just exactly 'what' the doc you consulted with actually gave you as your 'best possible case post op prognosis" with what you simply DO have going on in those legs to your feet? what is the best and worse case scenerios here if you do or do not have this surgery done. THAT is just what you most definitely HAVE TO KNOW before consenting to something that just even has the capacity to 'do" much worse TO YOU, vs making things even a tiny bit better? it comes down to simply wieghing your risk vs benefits/prognosis in this.

for me, it would simply HAVE TO be a pretty significant improvement overall and not just a 'possible' before doing something we already know just carries for you in particular situation just considering what you already have some huge side effects/impacts to alot of your areas where you already have RSD spread. just EVEN having any other areas decide to pop in on you would increase your particular risks here too. you just HAVE to do ALOT of research overall and be the very BEST most infomed type of patient you can be before placing your signiture onto any consent form for this surgery, thats all.

for some reason, i was under the impression that a person could ONLY get true dystonia in the neck area? i have never heard of this being that far down, but then again i am NOT a doc either. but another thing that i am wondering here just considering the very significant impact going on within your legs(all being well below that lumbar level too) at all is just what IS the underlying problem within your lumbar? it IS pretty simple these days esp to find out pretty much exacting ideas/findings/dxes of what is going on within anyones spinal. it really DOES come down to using the 'appropriate" type of scan, and most definitely with some type of a contrasting agent too.

i just really don't understand the fact that your docs 'appear' to KNOW you have 'something' going on within that lumbar but they cannot pin it down'? they 'should have already been looking into your FULL spinal for ANY level of possible contributors to your whole set of symptoms way before now. have you EVER actually had like a full c spine on down to sacral type of contrasted MRI before? this realistically, just given your hand and the foot symptoms, just really should have been done a long time ago as more of a rule out rule in type of test? it could also show if ANYTHING within that symp chain, that simply DOES run all the way down into the L area from where it pops out at within the lower c spine(the c 8 nerve level and exactly where MY SNS was hit and damaged), was having ANY impact on the outlets/ lower motor neurons or the basic 'spinal nerves" too. the chain itself is just very highly vulnerable once it comes out from within our necks then runs thru the structural outward outlets of the actual boney parts of the spinal 'column' as it litterally 'chains in and out of our cords at every level down to L. so a larger herniation of anything that is going more 'lateral(to the sides) could just concievably also impact your SNS at any of the c 8 thru L levels too(or even AT one of the four(2 on each side of cord) outside the cord outlets depending upon just what 'it' is impacting too. thats the main reason this just should have been checked out much earlier on, or esp after the initial spread occured. its just 'some' of what you have as RSD symptoms, trust me here, also CAN be stemming from either a radiculopathic(spinal nerve) response, or actual impact TO the spinal cord itself. i unfoertunetly happen to have both RSD FROM them hitting my dam symp chain outlet while they were doing a posterolateral type of cavernoma resection from within my cord that also damaged MANY different spinal tracts(we actually have like 26? of these tracts all running thru our sp cords) that also run signals to and from the brains high function areas along with just what else in within that cord as white matter, gray matter and nerve fibers that were 'in the way too. either this IS just full on result of RSD, OR a potential 'combo' of both, it IS just one possibility for the extent of your symptoms too. but the ONLY real way to actually 'know' anything would be to at the very LEAST here before anyone consents to even any surgery is to have that full spinal MRI done FIRST, just so they know what could also be potentially involved and generating its very 'own' symptoms that CAN at times, depending upoin what areas(s) of cord is being impacted, can actually 'show' some of the very SAME types of RSD symptoms too. even tho your 'presentation' of lumbar was more recent, that underlying damage/problems within the spinal more than likely had already been going on for at least maybe years BEFORE presentation? thats kind of how this crap works. whatever is just 'wrong' works its way and continues to degrade down a certain level on a highly progressive way, IN MOST CASES until it gets to the point where you even begin to actually feel it and it becomes an actual complaint or symptom that ypou report to your doc.. and by thet time, things already just can be pretty impacted in there. i would just ask for that FULL spinal contrasted MRI before anything else gets done on you laura. it just needs to be looked into a much more in depth way right now moreso just to see if ANYTHING within that spinal or cord or the symp is simply BEING impacted at all(esp IF CONTEMPLATING ANY SURGERY). or even 'possibly' where at least 'some' level of real impact is going on anywhere thru that symp chain too. stranger things have happened. we also CAN be born with certain things already being wrong in our spinal structures down to having like vascular malformations like i had actually IN or or even ON the spinal cord itself too. the ONLY way that these get picked up on is usually thru some type of more in depth scan like an MRI. i did NOT have a clue i had my glob in my cord at all til i needed an MRI for what we knew was an actual herniated disc. then and only then did that little glob actually pop in to show itself as an 'incidental finding' on my rad report. i was having absolutely NO real symptoms of 'it' before i had my ACDF and it got wayyy angry in there.

no one truely knows just what is or is not going on inside their own bodies til it gets 'seen'.

kev? while i do not doubt what you read is true, i still am having a very hard time in the realistic understanding of just 'what' it is about having general that could possibly 'provoke/create" an RSD spread, ya know what i mean(there would HAVE to be a 'something' actually triggering it)? i too really could not find a whole lot about this in any papers written anywhere when i searched on this yesterday either. i am only wondering what that real "link' there just could be that would impact anyones RSD with using the only general, or even with of course the appropriate blocks also being used too.? i have just personally had two separate(19 days apart) knee surgeries and also ended up needing an aneurysm coiling done too with no blocks given with THAT wonderful fun either, and have never ever had ANY actual changes occur to either my pain levels or esp no speading of RSD either. i really AM just truely trying to understand what the underlying 'trigger' is here and why would only 'some' people have this occur and not others too. it would just 'seem' that if the actual general was the trigger in some way, that this just also would casue this in every patient who had this used along with having RSD anywhere too, ya know what i am tryin to say here kev? just trying to 'get it' so my very slow brain can wrap itself around it,lol. it just would almost have to be kind of an all or nothing type response with someone who has underlying RSD or symp damage. ANY enlightenment you could possibly give us kev seriously would at least help those of us who are not getting it yet, to better understand what could be very real risks to us and ANY real 'link' between the two. thanks for any help with this part kev, really. marcia





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