Marcia, why would you feel like an idiot when I was just as mislead? I am the idiot for being so trustng, but I had a feeling after he told me the DX.
Put in the PM board. His office called today without me or my husbund having to call, one more refill. The person who called from the office needs to have a lesson not only in social skills but how to talk in a proffessional manner with patients who contribute to paying her wages. I am sick of condenscending attitudes. I was told like a child I better make this last script last, & his office does not make appointments for their patients. I am barely reframing from giving some of that office staff a piece of my mind, but I will hope to go on & not have to deal with them again. I even asked if I should deal with a PM that works closely with the surgeon, her reply was why? you won't be back here unless its for surgery, I told her at this rate that is a distinct possability!
Anyway narrowed down to 2 PMs, waiting on one more call. Both have experiance with Myofascial pain, & one with RSD. Both anasth. & both recommended by the Osteo.
Here is the thing, one is at a distance the other is fairly close, the one who is farther the Osteo seems to find to be compassionate., but have not received a call back yet, alot will depend on the wait to get in. The other one I can possably get in this week or next. Thank god. I am praying to make the right choice.
I just want a good PM & relief. The surgeon has not checked my ROM in along time. I don't think he feels it will improve without the other issues being addressed, he had the notes from the PT last appointment. I just think he does not want to take care of the meds,& I don't blame him to a point, but there is a way of handling things to alleviate stress & pain.
I told them I want my records, MRI report & cd, he will also be giving me a letter of recommendation for PM, some offices require it.
The one office he recommended was so rude that was not where I wanted to be. Lets hope I can avoid ending up with an office like that in future.
All of it is stressful & I think I will loose it if I end up with another doctor who is not understanding. What the h*** do these people think, that to be in pain & being told that this is now part of your life is just peachy? Well they need to take a good look at the PM board! Crazy! I will have to be careful my friend, I am normally a very respectful & more of less understanding person but I truely have no tolerance for doctors who just don't give a crap for the people they are treating. I will just count my blessings to have a refill & hope that I get a PM that does not take me offf my meds. Big decision. You never know. Once you get into a PM are you kind of stuck? Can you make a change if it is not a good fit? I just am worried sick about getting into a good PM.
Probably need to start a new thread, the way my luck is going better safe then sorry. As always thanks, your input is so valuable especially now with this new chapter starting in my life. Sammy
yes,you are in a new chapter here hon,that in and of itself can be a bit scarey,BUT you DO have some options here too so that should at least give you some wiggle room and choice,and thats always a good thing.
the reason i felt like an idiot is becasue right before the post you made about being released,i was telling you,oh don;t worry sammy,he IS a great ortho from the way you spoke about him and the feedback and just things he told you thru out this little post op nightmare. i have to say,it just completely shocked me to read what you wrote right after. like i said before,i do think 'someone' else had a say in this decision,it was just such a total turn around from what i assumed ya know? and what a bi*** that woman was to you. whats up with these people anyway? i still cannot believe he didn;t EVEN lay one hand on you yet thought it was actually okay to release you with everything that has not yet been identified and mostly that shoulder has not been evaled by HIM,ya know? it just is not where it should normally be when being released by any surgeon.
to a certain degree,you cannot always tell just how any real PM place will actually be treating you based upon the one time initial phone call,since they don;t know one thing about you yet or what you are actually looking for here,you know what i mean? you could be someone looking just for a place to feed an addiction or what you actually are,a pain patient who desperately needs help. this is just the way they can be til they get to know you more. they just HAVE to be careful for alot of reasons,thats all. PM is just a whole different ballgame than seeing any other types of specialists,this is the one big reason you have to be referred by another doc and no matter what your ins may say about not actually needing referrals, PM just is not that way becasue of what they do. they choose to take you on,not the normal way where you just show up and go from there kind of thing? believe me sammy,with what you have going on,you WILL be evaled and treated.just wanted you to be aware of how things may be initially. it takes a while to just build a certain level of trust with the PM and the staff. i am treated very differently by all of them now vs when i first started. just kind of don;t expect too much right away,you know what i mean? it WILL get better over time,it just takes building that ongoing relationship with these people. all you can do is just make the appt with one and then see how things go. the one who does deal with RSD really would be a great one for you to see,at least initially? you just have symptoms that need to be tracked back to the source,that may or may not be your SNS.
the thing here is they actually changfed the name RSD to complex regional pain syndrome,mostly becasue there are just different presentations of how the body(or affected area) will be depending upon the actual level of SNS affectation. so no two people will realistically present like another who has the same condition. it all depends upon what IS causeing the SNS to be affcted. it could be something as simple as damage to a vessel which is just governed by the SNS. i have a vasomotor malfunction in both legs casued by my SNS dmaage and the spinal cord crap.the vasomotor thing is kind of one of the signs. the coldness or heat that would be present in an affected area would be from ,at least inpart,the SNS. it dialates and constricts our blood vessels. i actually went from one extreme to another with the heat and cold thing. i started out with a huge amount of constantly generated heat( usually around 101-102 degrees by skin thermometer) but after trying lyrica,for some insane reason,that helped with the heat and the huge swelling i had going on in that knee area that just never ever went away,even after my ortho removed that huge B cyst from behind my knee and fixed the damage. it was still VERY pronounced til the day after i started lyrica,that fast,it just did that. day two the knee actually went down by half. it was just crazy really. by the end of one week,the heat was also gone. really crazy what lyrica did but like i mentioned before,the side effects were also very very pronounced. it sucked having to go off something that actually helped with even the central pain that nothing had ever touched before. i was just simply not able to even function on ltrica.that trade off was just not acceptable at all.
knowing just what your ortho has been thinking about the more RSDish types of symptoms you have been showing thru all of this would really help you to just know all that.you simply NEED to see what this man was thinking espescially after the 'drop" he did on you. i am pretty certain he just had to have seen at least some possible connection to the SNS involvement at some point if i could see it ya know? but seeing that anes to just get that one injection would really show whether there just is or is not that underlyinmg issue that could just explain so much of what is and has been going on. it is like somethig has been "feeding' this whole process all along,you know what i mean? it is running 'on' something to keep it going like it has been, and given your symptoms,that very well just could be the SNS. i am still wondering about the pre op symptomology you were ahowing wayyy before your actual surgery took place? espescially what was firing off the cardiac like symptoms but without cardiac involvement? the SNS just runs thru that chest/thorasic area so who knows ya know?
you ARE like i was,one big puzzle with alot of little freaky pieces that simply finding the right person,can put together for you. i understand much more about the 'whole' me now than i did before,mostly by doing my own research and tracking abck my symptoms.this internet thing has saved my sorry butt sooo many times.espescially when i Dxed with that cavernoma in my cord? geez. the freaking library had like one paragraph on them in one medical book. it was scarey there til we got the net hooked up,but then even scarier once i was really reading all about them too. the spinal cord is by far the worst place(even the brain is better actually since you just have 'room' for any bleeds) except fort he actual brain stem itself. people who have them there are kind of screwed.
the best possible things you can do for yourself right now sammy are just research your symptoms and get thee to a good PM who IS an anes. once you can either rule in or out the possibility of RSD anything they would do or not do for you would kind of hinge on that,alot. you just NEED to get that whole area much more calmed down,it is in almost constant inflammatory status. once they can confirm the underlying generator and get things done on that angle,they can better define the other contributors in there too. when you have that initial eval done,it will be with the actual PM doc then any Rxing goes to the NP who you see for the follow ups,but he puts the plans and the Dx in motion for them first.
just be totally and completely open and honest about EVERYTHING you have been thru and felt and tried to help manage all this,they will know you are in some pretty severe pain that has yet to ever really be controlled from the get go(let them know the pre op symptoms you had too,it IS important). not to mention just the fact that youer surgeon really believes this too by just continuing to Rx way out from the normal pattern. that does help too. most surgeons simply wont go there unless there is some really big indicators of ongoing severe pain. that much he DOES beleive you have sammy,trust me on THAT one,or you sure as heck would not have gotten that last fill either ya know?
all you can do as far as the PM is just give them a shot and see what they can really just do for you. if things don't seem like a good fit,you DO have a choice here. choices at least give YOU some control in all this ya know? just how much did the ortho give you on the rx to get you thru til your PM can get set up? enough i hope? that whole thing still just boggles the mind. the thing here is you STILL do need to have follow ups with that surgeon til the actual shoulder is able to be PTed properly and you actually get your ROMS back,does she not realize this at all? you CAN still see him to consult on that shoulder he is responsible for too ya know. he just wont be Rxing for you,that is how this should have been presented to you in the first place too. once any suregon does any surgery on you,you "have' him or her as someone to consult when things are not right or some other problem develops that needs evaluating by HIM as a surgeon,in that shoulder at least. but going back to him is kind of up to you.
if you need a better eval of anything spinal espescially up in that area,seeing an actual neurosurgeon would work too. that c spine and at least the upper thorasic, have a whole different type of nerve set up and are much more heavily innervated than any other areas of the spine that i just feel much better when i have seen my NS about things up there. orthos are good(and i LOVE mine to death) ,but when it comes to my c spine and that junction area right where the c spine ends and the t spine starts,you just really need the expertise of an actual NS up there. this would possibly help YOU in finding some contribuors that could be lurking along the spine up there too ya know? just some info to chew on for ya. something is/was causing the pain that you were having way before your surgery that i personally wouldn;t think would be related to the actual shoulder crap ya know? but that serratus "could' possibly be affected by something too,even within the thorasic spine itself. when the nerves are POed,it just fires to the attached or innervated muscles. even your SNS could have been affected simply by 'something' that was affecting that sympathetic chain since that chain actually runs along the outside of both sides of the actual spinal column not the inside where it would be more protected(i do believe that that serratus is just in very very close proximity to the column itself too)? my SNS damage actually occured inside of the cord where the chain actually runs out of that cord to the outside(the cav was located 'laterally to the left inside my cord,kind of right where that chain juts out from inside to the outside),but yours could very easily,given what was going on,could have had something that was just irritating it or pushing against it. you know what i mean?
just for the heck of it sammy, take a look at where that SNS actually runs,just do a search on the sympathetic chain and the sympathetic nervous system itself,this would at least show you where your more possibly vulnerable areas could be or have been. sometimes it just doesn;t take much at all to affect the SNS and end up with RSD. its just that insane hon. can you believe that some people,actually alot of people have ended up with RSD just from having a botched veinapuncture done on their arms? a simple blood draw is all it took to stimulate and damage or affect the SNS enough to actually trigger RSD in them. that is just how really freaky this condition can be or how you can get it,that easily. if i remember right,there are actually people here on the RSD board who got their RSD that way. have you ever just popped in down there hon to read thru some of the threads at all? alot of really great info down there and some very caring nice folks who are also just extremely knowledgable and helpful too. you just need some questions answered here by the PM/anes and any other place you can find good solid info. just in case sweetie.
i do hope that osteo will help you thru all of this change in your life,she does seem to at least give a crap about the hell you are now living in and have been living in. i do think she actually knows just what your true real needs are here. i wouldn;t hesitate to ask her about just what methods the PMs she knows of actually use in their practices. just tell her you really need the continuity of care here at least til some things can get figured out and properly treated by the folks who know pain and how to best manage what you have going on in there.
well let me know when you hear back from someone. personally i would go,at least for now,with whoever you can really get into the fastest right now. the thing is you really wont know just how things are going to be til you have at least had that eval with the PM himself and see what he or she thinks about your whole situation. just tell them you NEED better management of things you have not even gotten a solid Dx on yet,be able to actually heal that shoulder and be able to just do PT there, and that you just want your life back. you are simply tierd and worn out from being "assaulted' by pain every single minute of everyday. it will just take some time to build trust with any PM you see,so just know that going in hon,K? i do hope you can get into see someone asap. let me know sammy, you ARE always in my thoughts hon. Marcia