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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Thanks Kevscar. Well aware of the affects of surgery sadly. Mine started with one knee surgery, was made much worse by another. I had spontaneous spread to both arms, then ended up with CRPS type II in my right arm after a doctor doing a PICC placement hit the nerves.

I don't really have anywhere left for it to spread to. I've got very severe involvement of both legs, lower back. Severe involvement of right arm, less so of left arm, facial pain with intermittent swelling. Internal involvement - my stomach no longer works properly, almost killed me couple of years ago. Can't regulate my heart rate, on meds to keep my blood pressure high enough that I can get up without passing out... see what I mean?

My problem is that mostly I'm wheelchair bound. I feel it's making the CRPS worse. I try to walk with crutches, but my terrible foot position makes it near impossible. A combination inactivity and CRPS among other things have left me with osteoporosis of my spine - I have multiple spinal fractures and disc issues that won't heal.

If a doctor waved that elusive magic wand tomorrow and made my pain disappear, I'd still be unable to walk because of the deformity. My attempts to walk have resulted in bursitis, tendon problems, early ulceration. This is why I'm looking to surgery, despite the risks.
while i do not understand just what real impact using general anesthesia would have on ANY RSD impacted area(kev, are you simply referring to the absolute NEED FOR also using blocks or something more specific WITH the general itself?), i used it when i had my two knee surgeries with NO actual spread, either mirror or upward and no increase in my pain intensity either. BUT i also had a full deep femoral nerve block AND along with that a sympathetic nervous system block as well. tho it 'may' be possible, depending upon what they will be doing and how deeply they have to cut, to simply go with that deeper femoral nerve block which is VERY different and uses electirical stimulation to even produce this level of blocking and lasts much longer(very very different than the basic nerve blocks done in PM type setting?) than the 'basic nerve blocks" usually done in the low back is(and of course the SNS block too). you just 'could' possibly do an 'awake' type of surgery like i had done on my rotator cuff. they give you whoppin doses of fent and versed to just allow you to kind of 'sleep thru' the actual surgery. while the anesthesiologist is ALWAYS standing by even tho you are NOT under general or even intubated, you go into what they refer to as a "twilight sleep" mode thru the surgery(trust me, they DO give you more than enough fent to simply put you 'out' no matter how much that takes. i was knocked absolutely loopy even before the actual surgery). but incase there just is, and this did occur in one area of my arm, with a breakthru type of pain, the anes can very quickly give you a dose of propofal and you go immediately right back out(was 'awake' for like 20 secs then out cold again), only a bit more deeply using the propofal vs only the high dose fent/versed does for the rest of your surgery.

i had what is called an intrascalene block which blocks the entire shoulder and brachial plexus too so i could not actually feel anything. BUT(and this i did NOT know before) no matter how good any actual block just is, or the anesthesiologist who gives it too, it may not 'always' completely block like every single teeny tiny nerve we have in ANY given extremity. this is what i was told post op by my orthosurgeon and the anesthesiologist that is my PM too, as to the "why' or how i could have even FELT anything while that whole arm/shoulder simply did feel totally 'dead numb' to me. but it 'could' work depending.

the one huge thing with your situation tho laura is you already HAVE had a history OF mirror spread FROM having a surgery done. and that really could be exactly what your PM mentioned too, an real total disaster for you personally since it already 'just' even happened at all before. you may be able to do a much more 'adaptable to YOUR condition" type of overall stregnth type training/excercises to help build up the weaker areas that you simply cannot use right now becasue of how the feet are. i just really feel that you are at soo much of a higher risk, if not for spreading, to end up with a more full body system wide type in areas where you do not already have it, or a much more higher intensity of pain with ANY actual surgery done. this of course is only my opinion. i am actually wondering just how much of your overall symptoms just could also be stemming from a spinal issue considering what you mentioned about THAT being an issue too? i also lost what is called the "parastaltic wave' on only my R side from actual spinal cord injury among other crappy stuff i have lived with since my cord was damaged at all in 03(also triggered my RSD with symp chain hit).

seeing an actual physiatrist if you have not done so already may help to shed some light on just what IS potentially a spinal symptom and what is RSD. i just think you may have more spinal involvement than you think you may have, thats all.

but if i were just in your shoes here at all given your past history laura, i would be VERY careful and very apprehensive in even going the surgical route,esp if you have also had any actual real issues WITH or WITHIN those feet too since you could also be dealing with at least some level of actual neuropathic types of nerve damage in there which can turn into a more severe form of what is called 'neuropathic pain'. and it is just as hard to treat as RSD. but i do wish you luck here in whatever you decide hon. marcia
Thanks Marcia - I know exactly what you are saying. His answer was exactly what I expected too. You know how it is though, I'm sure - there is a certain point of desperation sometimes and you just hope that someone, somewhere has a positive story to tell?

The spread to my left leg wasn't after surgery to my right, it came about three years after. It was 'spontaneous', but my doctor thinks overuse injury was probably part of it. Even when I was walking I was heavy on my left foot because my right leg hurt. Then the dystonia in my right foot meant that I needed crutches, meant that I was heavier still on it. I've done a bit of a timeline :)

'99 - R knee injury & surgery >> lots of pain, swelling, etc of R knee (no diagnosis)
'05 - 2nd injury & surgery on R knee >> worsening or R knee, spread to rest of R leg, already developing dystonia
'05 - SCS inplant
early '08 - spontaneous onset in L foot, spread up L leg, stomach (gastroparesis), back, baclofen pump implant
mid '08 - spontaneous onset in R hand/arm, then L hand/arm,
late '08 - dystonia in L foot >> now needing wheelchair because of the dystonia, which isn't responding to any therapy.
'11 - Arms had settled, then developed CRPS type II in R arm after doctor hit nerves inserting a PICC.
Facial problems are intermittent - my face will swell/burn at random, thankfully not a constant.
More recently - HR, BP, temp control issues

The spinal issues are much more recent - the last six months or so. I have osteoporosis of my spine, fainted a few times onto a slate floor...and fractured most of my thoracic vertebrae. Have something going on in my lumbar spine too, but the doctors can't pin it down.

K_Lana - thank you too for your input. I must admit that before posting here I've never heard about not using general anaesthetic, only about the importance of using nerve blocks and good pain relief. I've had other surgeries - several for my spinal cord stim ( which were a disaster because of the doctor), but recently had to have my wisdom teeth out. Was very worried about it because I'd had a bad face flare a couple of weeks before. My anaesthetist was wonderful - the surgeon had told him I was 'complex', so he phoned me the day before and spent almost an hour talking things through with me. I was out and intubated, but he also used nerve blocks, he gave me ketamine and steroids during the surgery - who knows if it 'worked' or if it never would have been a problem, but I had no flare with it.
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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