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Brain & Nervous System Disorders Message Board


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wow,what a freakin ride for you huh? when you mentioned how this happened it kind of made me cringe as i was comtemplating having the phenol injections done for the same thing.pain control.for whatever reason,my ins co wont pay for an actual ablation but my PM,who is a very experienced anesthesiologist(like 25 years doing this now?and has done tons of various injections on me since 04)told me they can get around that by doing the same burning with phenol.what exactly was wrong in your c spine that led you to even do the radio frequncy thing?i am glad you got a lawyer,this guy screwed up big time.have they tried any sort of PT to try and regain any arm function yet?i was able to amazingly get that full leg function back with a really great team of PT people at the facility i was at.they really can work miracles there let me tell ya.

have you had an EMG done to really see the full extent of nerve damage and or loss?it would probably be kind of painful given the RSD,but quite honestly is the really best way to check for nerve damage and the full extent.it measures the velocity of the flow within the nerves.you just really do need to know the damage.

it does sound from your description that they did indeed hit that stellate and the fact you responded even a little means that this is in all liklyhood RSD,or sympathetically maintained and generated pain with RSD being the most likely culprit.i know having that stellate done with that big old needle directly into the front of your neck ain't fun in the least either,unfortunetly,its one of those neccessary evil things.when you developed that horners,you know they at least hit the right spot.it does sound like they are doing the right meds with you,really.i had a very bad experience with cymbalta and it did nothing for my actual pain.lyrica actually touched my RSD and my central and reduced the knee swelling by about half but i developed really nasty eye and co ordination problems and had to stop it.i was really bummed because it was actually working for me,but i kept walking into walls and tripping over my feet and i was having the most freaky double vision.instead of the more normal side to side doubling,mine was actually going up and down.never ever even heard of anyone having double vision up and down before,that really scared me the most i think.just plain freaky ya know?but i have heard alot of good with lyrica and RSD type pain.the other meds you are on all appear to be the best ones for this particular nastniness.have you tried any sort of actual topical type of meds or products on the most painful areas like lidocaine patches or gel/ointment or even prudoxin cream?i was given the prudoxin by my rehab doc when my central pain was just a screamin at me.its like a second degree burn(Xs five?) that just never heals,that burning and stinging crap andthe sensitivity to light touch and even the breeze blowing over it can set it into sheer hell?some of this is indeed the same 'type" of pain as with the RSD.i really don't know why the prudoxin cream works but it just really helps with the overall sensitivity.i do seem to be able to obtain much better pain management with topicals than the other meds i have tried.its just another set of 'tools" to use.but you getting to PT will really help i think,at least in trying to regain some level of mobility and usability in that arm.also desensitization therepy can do wonders to try and make it much more tolerable to even wear clothing over the affected areas too.

having repeated stellate blocks can in some cases get it to remit some,really.this crap needs early Dx and agressive treatment in order to obtain the best possible pain relief.have you visited the RSD board here down below on these boards yet?they are some really wonderful people down there who all are suffering with the same crap you and i are.so believe me,they will understand just what it is you are having to deal with here.

i really am so very sorry you ended up with this crap,honestly,its one of the most hellish neuro pain type syndromes known to mankind.central pain is the other top crappy neuro thing.lucky me, i got both.

from what you have described here regarding the team of docs who are working with you,they really do sound like good ones who do know how to treat the symptoms of this crappy syndrome,so thts really something,believe me.many people will go for years being told its all in their head despite the swelling and lovely color and temp changes.unbelievable really but unfortunetly very true for some people.

i am usually hangin around here so if you have any other questions i would be more than happy to try and answer them for you.but DO scroll on down to that RSD board,you will find very nice knowledgable people there who will welcome you with open arms.i am just sorry you are now in the 'club'.please keep me posted on how things are going,K?good luck hon,Marcia





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