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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


dam karen, i really am sorry that this appt was about the same as you last one. i know what you mean about having that stupid SCS, that i most certainly was not at all ready for after JUST suffering my SCI to have pushed on me too. only this was from the neurosurgeon who had done my hemangioma resection only about 2 and a half months prior to try and knock down what was 'only then" the insanity of what just IS central pain syndrome(this was only then ONE of what WAS going to turn into two pain syndromes VERY shortly after). while even the actual website for the original manufacturer of the SCS, or medtronics, who invented this also states that this is something to ONLY be used as more of a 'last resort' AFTER trying everything possible thru good PM FIRST?? i had not even BEGUN to get that far and my RSD was 'just' about getting ready to show itself to me too within weeks after that.

while it truely can be a lifesaver for some, i also know someone personally who ended UP with actual RSD FROM a very stupid and botched SCS implant into a highly scared up lumbar area that NEVER ever should have even had it implanted in the very first place. it is just NOT at all some type of 'wonder PM" for RSD or other uncontrollable pain. and most STILL have to take at least some form of narcotics with this too as well as that pain pump that shoreline has implanted on the pain forum? he too still has to take breakthru meds and actually also wearing the implantable pain pump in his spinal. that decision is just a really HUGE commitment and you also cannot have anymore MRIs done either, even if they remove the parts that CAN be removed if you should decide the SCSjust is NOT doing it for you, you still have the cemented in leads to deal with too, so STILL no MRIs.

i do think you have a really good plan here tho karen. you just at this point HAVE TO get out of the current PM to find any REAL help with this nightmare. the one type of good doc to try would be, along with a good PM or if this particulr doc also does his own PM, would be what i think i might have mentioned to you before as a knowledgeable in RSD 'physiatrist"? these are really amazingly knowledgable on just how our bodies are 'supposed to' move/work FROM all the many nerves we just have wayy much more than mere physical medicine docs are and could help you with this too(they are kind of a 'mix' of a good neurologist and way more knowledgable physical medicine types of doc?). just a thought. i still see mine that i got hooked up with as my rehab hosp doc who actually helped me to walk again with the once knocked out L leg and get at least "some' use back in that L hand from all the fine motor muscle losses i also took.

but simply getting the very BEST in PM care right now IS your main goal. so DO ask your neuro or your primary when you see him for the depression. either one just 'may know' about another PM that is actually willing to 'work WITH their patients to help control pain' and that IS what any good PM simply does when you can find the really good dedicated ones. i was lucky in that the place i got referred to by my primary was really a great place to go and a good 'fit' for me in all ways. you just DO deserve 'good knowledgable and experienced" pain care karen, esp with what you have going on in all extremitys too, among other things.

the best thing to do whenever you are calling to set up an appt with ANY new doc, esp in PM is simply ask them right there over the phone if they have anyone who actually "specializes" in the treatment of RSD and neuropathy too that you just could be directly referred to THAT particular doc when you go. sometimes you just DO get lucky.

but i really am sorry hon that things just din't go better for you. and they ARE basically 'brushing off' what are YOUR main complaints just are and have been, which is soo not right and why you FEEL that way at all as well. hopefully there IS that 'right' PM/specialist out there for you. while it may take some searching and phone calls, finding that really great PM is soo very worth it, esp with even having RSD at all. it simply has to be 'managed properly' BY someone who also 'gets that part", or they could make things much worse for people like us, and not better. but with all of the new knowledge you now have along with much more confidence than when we initially 'chatted' on the pain forum weeks ago, you will most certainly 'know good' when you hear it and what 'they' tell you that can at least try and do for you karen.

just do NOT give up and end up 'settleing' for much less than you just DO really deseve as far as real help AND treatment options, other than that SCS. good luck and please DO keep us posted hon, marcia

just an FYI here hon regarding changing your actual already known to others 'screen name" goes? whenever you change that one thing, every single post that you have already made under your previous one, also gets changed as well. it really is much harder for anyone who has kind of seen you as a possible 'relatable condition contact person" to actually try and track you down. ya know what i mean? thats why it is always a good thing to not change THAT particular name unless there really IS a very good reason. it just makes people who know you by your initial name harder to find you who just may be able to also help you or you help them kinda thing? just wanted you to know that. since when i just even read that email alert in my inbox as usual when someone adds to a particular thread, i had absolutely NO real clue as to who this 'hatemyfeet' actually was til i got here and realized it was you karen.

believe me, when i initially found this place way back in 03, i chose the name feelbad only cuz THAT just truely was where i was at then both in head and body. and desptie actually having some much better days since then, i have been tempted to change it, but i know since i have just been here so very long that it could also possibly confuse others, so i keep it the same. since they NOW also have that 'mood' thingy here, THAT would be something you could change pretty much anytime you wanted to without 'disrupting' the potential contacts who may need YOU to relate to,but trying to find you under your other name. some people here, esp the newer ones, do not yet even realize that they CAN actually track anyones individual posts by simply clicking on their names(like you just do to send a PM?) and clicking ON that particular heading. just an FYI for ya karen.

good luck hon. just be ready to dive into this over the phones on monday. but get in to see that primary first since it will more than likely take at least a couple weeks if not longer just to even get an appt with your neuro. that depression just really NEEDS some good attention right now too. TTFN,me
[QUOTE=feelbad;4934292]dam karen, i really am sorry that this appt was about the same as you last one. i know what you mean about having that stupid SCS, that i most certainly was not at all ready for after JUST suffering my SCI to have pushed on me too. only this was from the neurosurgeon who had done my hemangioma resection only about 2 and a half months prior to try and knock down what was 'only then" the insanity of what just IS central pain syndrome(this was only then ONE of what WAS going to turn into two pain syndromes VERY shortly after). while even the actual website for the original manufacturer of the SCS, or medtronics, who invented this also states that this is something to ONLY be used as more of a 'last resort' AFTER trying everything possible thru good PM FIRST?? i had not even BEGUN to get that far and my RSD was 'just' about getting ready to show itself to me too within weeks after that.

while it truely can be a lifesaver for some, i also know someone personally who ended UP with actual RSD FROM a very stupid and botched SCS implant into a highly scared up lumbar area that NEVER ever should have even had it implanted in the very first place. it is just NOT at all some type of 'wonder PM" for RSD or other uncontrollable pain. and most STILL have to take at least some form of narcotics with this too as well as that pain pump that shoreline has implanted on the pain forum? he too still has to take breakthru meds and actually also wearing the implantable pain pump in his spinal. that decision is just a really HUGE commitment and you also cannot have anymore MRIs done either, even if they remove the parts that CAN be removed if you should decide the SCSjust is NOT doing it for you, you still have the cemented in leads to deal with too, so STILL no MRIs.

i do think you have a really good plan here tho karen. you just at this point HAVE TO get out of the current PM to find any REAL help with this nightmare. the one type of good doc to try would be, along with a good PM or if this particulr doc also does his own PM, would be what i think i might have mentioned to you before as a knowledgeable in RSD 'physiatrist"? these are really amazingly knowledgable on just how our bodies are 'supposed to' move/work FROM all the many nerves we just have wayy much more than mere physical medicine docs are and could help you with this too(they are kind of a 'mix' of a good neurologist and way more knowledgable physical medicine types of doc?). just a thought. i still see mine that i got hooked up with as my rehab hosp doc who actually helped me to walk again with the once knocked out L leg and get at least "some' use back in that L hand from all the fine motor muscle losses i also took.

but simply getting the very BEST in PM care right now IS your main goal. so DO ask your neuro or your primary when you see him for the depression. either one just 'may know' about another PM that is actually willing to 'work WITH their patients to help control pain' and that IS what any good PM simply does when you can find the really good dedicated ones. i was lucky in that the place i got referred to by my primary was really a great place to go and a good 'fit' for me in all ways. you just DO deserve 'good knowledgable and experienced" pain care karen, esp with what you have going on in all extremitys too, among other things.

the best thing to do whenever you are calling to set up an appt with ANY new doc, esp in PM is simply ask them right there over the phone if they have anyone who actually "specializes" in the treatment of RSD and neuropathy too that you just could be directly referred to THAT particular doc when you go. sometimes you just DO get lucky.

but i really am sorry hon that things just din't go better for you. and they ARE basically 'brushing off' what are YOUR main complaints just are and have been, which is soo not right and why you FEEL that way at all as well. hopefully there IS that 'right' PM/specialist out there for you. while it may take some searching and phone calls, finding that really great PM is soo very worth it, esp with even having RSD at all. it simply has to be 'managed properly' BY someone who also 'gets that part", or they could make things much worse for people like us, and not better. but with all of the new knowledge you now have along with much more confidence than when we initially 'chatted' on the pain forum weeks ago, you will most certainly 'know good' when you hear it and what 'they' tell you that can at least try and do for you karen.

just do NOT give up and end up 'settleing' for much less than you just DO really deseve as far as real help AND treatment options, other than that SCS. good luck and please DO keep us posted hon, marcia

just an FYI here hon regarding changing your actual already known to others 'screen name" goes? whenever you change that one thing, every single post that you have already made under your previous one, also gets changed as well. it really is much harder for anyone who has kind of seen you as a possible 'relatable condition contact person" to actually try and track you down. ya know what i mean? thats why it is always a good thing to not change THAT particular name unless there really IS a very good reason. it just makes people who know you by your initial name harder to find you who just may be able to also help you or you help them kinda thing? just wanted you to know that. since when i just even read that email alert in my inbox as usual when someone adds to a particular thread, i had absolutely NO real clue as to who this 'hatemyfeet' actually was til i got here and realized it was you karen.

believe me, when i initially found this place way back in 03, i chose the name feelbad only cuz THAT just truely was where i was at then both in head and body. and desptie actually having some much better days since then, i have been tempted to change it, but i know since i have just been here so very long that it could also possibly confuse others, so i keep it the same. since they NOW also have that 'mood' thingy here, THAT would be something you could change pretty much anytime you wanted to without 'disrupting' the potential contacts who may need YOU to relate to,but trying to find you under your other name. some people here, esp the newer ones, do not yet even realize that they CAN actually track anyones individual posts by simply clicking on their names(like you just do to send a PM?) and clicking ON that particular heading. just an FYI for ya karen.

good luck hon. just be ready to dive into this over the phones on monday. but get in to see that primary first since it will more than likely take at least a couple weeks if not longer just to even get an appt with your neuro. that depression just really NEEDS some good attention right now too. TTFN,me[/QUOTE]
Hey Marcia, I gotta say I am not looking forward to the pain in my behind getting a new PM will be. But I am feeling pretty empowered and I am going to do what I have to do. :) Ya know I asked my PM about seeing a physiologist (sp?) and they told me that nothing different would be done for me somewhere else!? Kay...right there I was a little doubtful about my care with them. Shouldn't they want me to get all the care I can from different types of doctors to feel mybest? What are ya gonna do...get a new PM Dr! Anyway, thanks again sweetie. :) And yes, I don't think I thought the name change through....oops! :) :)





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