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Old 05-27-2008, 07:32 PM   #31
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Re: Feelbad, Chest/Rib pain

Marcia, Called the surgeons office for refill & appointment, what a mess. The receptionist was in such a hurry I know she screwed it up. I tried telling her the pharmacy did not have the full amount so I was shorted two pills, which had me needing a refill aday early, she said so you only take two aday? I was so frustrated, I told her no, infact the pharmacy should have called them & for that matter I was increasing my morning dose which is still with in accordance with the instructions by the surgeon. She just was in such a hurry & rude as all h***. I will be happy to be done with that office staff.
The Osteo called & was super nice. Agreed that I have to have pm & no therapy can be done without it first. Because of the location of my problem she said it is just to hard to prevent it from being aggravated. I told her I wanted to attempt some form of therpay after getting good pm & she said she gave me alot of credit for wanting to try again & with that attitude I should do well with a PM doctor. She also said she did not want to "step on the surgeons toes" but if I have a problem getting into a pm to call her. She gave me the names of three & said to see who the surgeon recommends, that he probably dealt in PM more then she did & he may recommed one of three that she recommended. I am tired of waiting & can't get into the surgeon till june 16. I am sick of waiting to see if I get a refill. I swear he is never been in when I called, ever. I am so worried I am sick to my stomach. As my girls would say this sucks! On the other hand my husband is pushing me to try accupuncture & is really upset thinking I will be kept on pain meds, he is driving me crazy. I have tried to explain to him I can't go with nothing & he realizes that but he associates PM docs with pain meds. I could just scream, well already did that, all it did is give me a headache. I'll tell you this is to much stress.
At least the osteo doc. understands I came right out & told her my life is in limbo here & I am worried sick, I need to work at least a couple days a week eventually. That is when she told me if there is a long wait for PM to call her. I also told her I am willing to try injections & what ever else a good pm recommends, not just the meds. I have got the wrong doc. willing to help me out, but she does not deal with any meds.
I am sorry your still having problems & would love to see one of us come on here & so I feel great. How is your ROM with that shoulder? Man mine is really hurting aong with the other one, even my hands are hurting. Girl I only have acouple pain pills left I am in trouble if they do not call tommorrow, I just know she screwed up the message. I will not be able to get out of bed & that will have my husband seeing red. Heck I have waited long enough for some decent pain control, I swear I have at least 20 more gray hairs from today. I am wondering if I should just call the surgeons office back tommorrow & ask to speak with an assisstant , let them know what the osteo said & ask if he will help me get into a pm, what do you think? That or wait for the appointment? He already said he does not know what else to do. The only worry is these shoulders. Let me know what you think. Lets hope for that call tommorrow. Sammy

 
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Old 05-28-2008, 09:47 AM   #32
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Re: Feelbad, Chest/Rib pain

i definitely would call again and see if you can maybe even speak to whoever you spoke to before? or if she was just THAT bad,speak to his PA or NP,whoever he has help him out(they also have the ability to write Rxes too)? all surgeons have at least one trusty "sidekick' you know what i mean? that would probably be the best person to speak to to make sure their wasn't a lost communication. since your pain depends upon getting the next refill,and YOU are the one who will suffer here not them,i would just double check and see what they actually got as far as a message you left. sometimes you just have to cover your own butt here ya know? just tell them when you call that when you called before "and i know how busy you all are",BUT,things didn;t seem "right' and you were not sure that things got across to whoever you spoke to. that would be understandable in most surgeons sometimes very busy chaotic offices. that should help to at least know whether or not you got thru to whoever you spoke to and then act accordingly if they did or did not actually 'get it'. that should at least let you know where you stand with that and its one less thing you don;t have to worry about or feel no control over,you have more than enough of just THAT going on. believe me i know how that feels hon.

you have found a great helpful person in that osteo my friend, getting her to actually help speed things up here and just 'do' for you is really an asset right now. take help where ever it comes sammy. people are placed into our lives for good reasons,trust me on that one. take them for what they can offer you and go from there. never turn down help,espescially from any real doc who can help you to just get those needs met. i would however ask her about the referrals she gave you or is going to give you as to what the pain clinics overall philosophy is with reagrds to their modalities. meaning do they do more than just injections and not actually offer help when needed in the form of like long acting narcotics,which you just desperately do need right now just to handle things and 'do" things. or just discussing each referral with your surgeon in the way of who can take over your Rxing and offer me the best possible modalities to try and manage and actually Dx my process here? the thing is,if your surgeon didn;t truely believe that you do just simply need that narcotic help,he would not still be Rxing for you ya know what i mean? he knows what your needs are there,and sometimes that is a battle in and of itself. you just do not have to worry about that part,believe me sammy,he is already convinced what your true needs are. also telling him that you are absolutely terrified to have to actually feel the full impact of your true pain without the narcotic help,will help too. he knows how scared you are hon. he is probably also scared for you too. i know my ortho was with the thought of even have to actually eventually cut into my RSD knee and told me that at the very first visit. when i had told him how scared i was to even have someone cut into that knee just to remove that bakers cyst,his reply was,well,i am kind of scared to go there too since there is no way to really know how the RSD will respond. kind of made me feel like at least he understood,but also just confirmed what i was already thinking,ya know? he turned out to really be one of the best possible surgeons for me and my situation. he has compassion,and not all surgeons even have that for their patients. trust me on that one.

but i would make that call just to double check all things and see when you can meet with him for the PM chat too. you just HAVE to have someone manageing this for you who can do for you and help control it to a better degree. your surgeon knows this already and probbably already has some good ideas for you since he just simply cannot go on rxing for you forever,i am sure he has thought about this by this point in time. at least you know that your surgeon and you are pretty much on the same page with this and that helps tons for you sammy. you simply need more experienced help that he cannot give to you and he knows that. ya just gotta keep hanging in there til you can get to the right people for the job. i know it sucks to be where you are,but there IS a bit of light at the end of the tunnel,you will see it at some point soon. right now there is just way too much unresolved crap you are dealing with that can get in the way of that bigger picture, once you can get some answers and some better stability in your life,it will just "be" better hon,really.

just an FYI for ya hon,that explosion you had the other day? wonderful really. it got out all the crap you have been just sucking up and accepting since day one. it was bound to happen and it did it right in the best spot,in front of the people who need to know the most how incredibly frustrated you are, it was a 'good' thing sammy,not bad,really. they needed a wake up call here and you just provided that for them. i have been where you are sammy,way too many times to count just since 01. my family was pretty clueless too as to what i was truely suffering,espescially post op with the huge losses from the SCI and all the new crap i had to deal with. i ended up kind of doing the very same thing you did. and my my some things did change around here for me. luckily,my oldest also has ADHD and took off with doing alot of things for me(he has always been my little 'doer'). some he was already doig since i just could not yet physically do them. but they knew after that explosion just what i needed and why and they did step up. not amazingly,but i could tell they were a bit different after that. it was just going to happen hon and personally i think it was a great thing and done right where it should have been. so don't beat yourself up about it,K? its just time for some 'payback' and deligating some responsibility for all things you have busted your hump to do for them. this is just what family does for family. okay,im done now. let me know how the phone call goes hon.marcia

 
Old 05-28-2008, 11:19 AM   #33
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Re: Feelbad, Chest/Rib pain

Crap Marcia if anything becomes more of a mess I am getting into bed & staying there.
I have deleted my orginal post to redo, I have not had my pain meds since 6:30 am & it is 4:30, Had one left & saving it for morning. NO Way!
OMG, I am in big trouble with out taking the meds I realized how bad this is, my other shoulder is really hurting, both & my chest & ribs are going crazy. Called the office back this morning & at first they said I could get script tommorrow, then they had the assisstant call me back about what the osteo said, girl I can barely remember what I said to her, sobbing in pain. She said she was asking the surgeon there to see if he would give me a script & would call me right back, mind you this is at 4:10, office closes at 5:00, mean while my husband left work to be there in time (hopefully) to pick it up in case they gave me one, well 4:30 she called back to say he would give me enough till friday & then I would have to go through the surgeon. She asked could I get there to get it & I told her no way but my husband was going to try. The only good thing to come out of this day from h*** is she said I am in to much pain & she does not blame me for wanting to get into PM, she said she could tell just by speaking to me how much pain I was in. God, I did not even realize how bad it was. That other shoulder is bad, I never realized how bad till I did not take the meds, the post op side hurts all the way down the arm. I am scared,more now then ever. I did tell the assistant that they said it is myofascial damage, her reaction surprised me, she said oh my god, you have to have something for that pain. Does she know how bad it can get I wonder?
I know my husband will probably say something. I told her I had no way of knowing the surgeon would not be in. At least she got some where, I am not even kidding I could barely talk, soon as I got off the phone I took the last perc. I was saving for morning. NO way could I make it in the morning with out something,it would have been worse. Norco, skelaxin & motrin & my pain level was just going up, it was about an 8 when she called it would have easily became a 10 in no time. God you don't even realize how bad you are till you have no relief. NO way am I letting this go for any length of time, I think I told her that the surgeon needs to let me now about PM, heck I can't even remember.
My husband just called to say he broke every traffic rule to get there & just made it to get the script. Thank god!
Well this is just made me realize how bad I am & that other shoulder has issues, crap the surgeon wont touch it because I don't have full use of the left one yet. If this does not get me into pm nothing will, & I am going to say prayers no stop to get into a good pm. I am also going to make sure I try to get the surgeon to help me chosse a good fit. After everything I have been through I want a PM doc. that is at least understanding. I know the surgeon has been good to me & trust me I do appreciate it, but enough. I also know I got real lucky with the osteo after 3 visits realizing I need PM & offering to help me get in. I count my blessings but today was a wake up call for me.
Thank you Marcia for just being you!
Let me know how your shoulder is doing, are you having problems with the other shoulder at all? I am most defianantly a freak like you. At least I am in the best of company my friend. Sammy

Last edited by sammyo1; 05-28-2008 at 03:29 PM.

 
Old 05-29-2008, 09:18 AM   #34
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Re: Feelbad, Chest/Rib pain

well that was a big WHEW huh? been in that situation before with my NS who was still 'trying' to manage my pain after the sp cord surgery? his nurse,who was just wayyy too overwhelmed by the sheer volume of his patients needs(he was the head of neurosurgery),kept on "forgetting" to send my actual oxycotin Rxes to my pharm? yep,that sucked. i had to call my primary like three times just for back up. luckily he knew how things were. my primarys triage nurse finally called up to the U one day after the thrid time this occured and i was left hanging again on a friday? she told them if you cannot take care of our patients PM needs,we will be taking over,click. she was ****** at them. but this required,at 4:45(they closed at five) for my hubby to have to jump out of the chair and just fly to the primarys to just pick up that Rx in the nick of time.geez.

needing this crap just to not have to feel tortured and also go thru the lovely withdrawls just sucks sometimes. its always a bit apprehensive for me when my meds are due. i do get these sent from my PM right to the pharm. we have had a couple glitchs on THEIR end but overall i can catch anything over the weekend before my Rxes are due so i can at least get things set before i really need them on the following thurs from when i make that request on the wed before. when i call in my requests,if they are not actually listed as being in my online walg acct by sat at the latest,i know something went wrong there. then its phone tag til i can get whatever figured out. that part sucks. but luckily for the most part,they are pretty great at getting them sent asap for me.

you just really do need that PM asap hon.you need to find out some things and also get the best types of treatments for your process there. just getting onto a much longer acting med would help tons since you are and have been woefully undermedicating yourself out of fear. thats an issue too. a good PM would,besides doignthe stellate for you,titrate you up on a longer acting med til you at least can find a tolerable level. things got soo much beter for me when i got to the PM sammy,really. when i started there,my primary had me on only two 20mg OCs a day,by the time we titrated up at the PM on the OC,i was at 60-60-60(this was about april or may of 04). quite a big difference there but my RSD was not showing itself really insanely bad til right about the time i showed up at the pain clinic in feb 04. my actual surgery had been sept of 03. but things have just progressed inside my body,espescially that dang c spine over the years and things are just plain ugly without the meds.really ugly. i simply have 'something' wrong in like every level of my body now,literally from head to toe,lmostly on that right side. very crazy.

my left,non operated on shoulder and arm has alot of unresolved pain too. i did overuse it wayyyy too much while the right was tied up in that sling and after just to get certain things done. it suffered for it,espescially since i also have almost no fine motor function left in that hand. god,it was such a cruel joke,ya know? it was rather pathetic. my right stillhas alot of pain yet but my ortho seems to think this is still within normal limits for me and what was done. he said things at a deeper level are still healing and that it just DOES take about one year to really fully heal and get back that area to its fullest. my PT has been a bit lax and thats been my fault. i have to be more consistant. i NEED to have the diaphram rereleased agin since this stupid kidney keeps ******* it off constantly. my freaking kidneys are simply way too big for my body right now. having that right one smooshed up into the diaphram and my stomach and i am pretty certain my right lung at this point just creates much more pressure upwards into that already bad area. things just wont get better til the bottom falls out with the kidneys themselves i think.

simply aspirating the cysts when you have PKD,really does not do a whole lot since they tend to fill right back up again. my neph also does not even like to do biopsies on his PKD kidney patients since other tests can tell you alot without having to go that route. even one actual needle stick into my kidney opens a possible route of infection to it,he feels its too risky to do when someones kidney functions are not yet being affected(if it ain't broke?). still freaks me out tho when i see my labs and then look at those really solid cystic filled kidneys i have that are about four times their normal size right now. too freaky really. its just my labs and my ultrasounds just don;t look at all like they would actually go together or even be from the very same person. wierd.

PKD actually just displaces healthy kidney tissue it doesn't tend to really "take it over' like with a cancer or something? thats one big reason most people who have this simply have no real clue til around age 40-50? it isn;t til the kidneys get too big and 'feel' uncomfortable,or the real damage just reaches that 'magic' level where the labs change that they find out. i wouldn;t have known til who knows when if our son had not gotten deathly sick and was Dxed with it and also a mutated offshoot gene that created the fibers growing inside his liver even when he was still in the womb from what his GI doc told me. just didn;t EVEN have a clue that he was even sick til age 12 when he was actually IN portal hypertension and vomiting up blood. how insane is that?it is truely amazing in just how our bodies can compensate in certain things. thank god for transplant huh? but i digress.

so how many percs do you have til you really need that next fill or see that ortho hon? just having to undermedicate really doesn;t help when you are trying to cover the levels of pain you have been having to. the best thing you have going for you in all this is a real ortho who believes your pain,and that IS alot sammy. having other docs backing you up is just a huge plus too. you really have to start trying to see what it is you actually have as far as support and the people who all want to help you,and have somehow entered your life hon. that can get lost in all the negative crap. but you DO have some solid positives here too that you just DO have to keep thinking about. the negative crap seems to always overtake the good stuff,but it IS there if you look for it sammy,really. i was at a point where i just had been soo completly totally slammed by so many awful things occuring within just a very short period of time that out of sheer desperation one day,i HAD to start looking at what i DID have and not what i didn;t,or i would have compltely lost my freaking mind then. my depression had just gotten that bad at that point. there IS kind of a trade off in all this sammy,really. every crappy thing you have had to endure in your life and go thru with this surgical nightmare does have good in it,its just something you really need to look for at some point. certain things just happen whenever we have to force ourselves to deal with nasty overwhelming crap. this all just creates particular realizations that you never ever woul;d have realised if you had not gone thru what you did. i have changed alot as far as how i feel about things and the way i look at life now,and mostly what i appreciate more and what i truely am grateful for. things i took for granted at one time? no more. nothing is for certain,just appreciate what you can when you can,and be thankful things are not worse than they are. that one thing i KNOW is very true. things can always be much worse than they are,to anyone at anytime with anything. i try and look at was not actually happened or the huge bullits i didged with my surgery, the potential for disaster witht hat particular surgery and just having that cav in my cord were huge,whether i had it removed or if i had chosen to just 'monitor" it and waited for the carnage that was coming with the next bleed. i AM thankful things were not much worse,cuz they certainly could have been,believe me. too many unknowns and the stuff i did know was going to happen sucked too. but i made my comback from that and you will come back from this with the right people just involved in your ongoing care sammy.

do you have a set appt with that ortho yet or is that still pending? just use this time to gather all the info you are going to need for that appt. and make some calls to PMs or find out just what they do and don;t do for their patients. planning ahead really can make the difference when it comes to these types of appts. but that PM needs to be involved here as soon as humanely possible. you also just really need better definition of everything and anything that is contributing to your pain so each thing can be properly addressed and hopefully treated in some way. you just cannot really progress til that crap all calms down in there. hopefully they can get things moving for you considering the situation. when any surgeon/doc really feels that his patient is in a very bad situation,they can make their 'own' phone calls to whoever they are being referred to. it does help,believe me. it wasn;t til my primary called my ortho that my appt got moved up that i had made,from three months away(honestly) to about three WEEKS away. see what your ortho can do for you here,they DO have pull with other docs much more than we mere mortals do,that much i KNOW for a fact. one really good call from your ortho to any PM he refers you to can help getting in WAY earlier than any other patients being referred by their docs. simply asking him,and since he knows how bad you are,if he could please 'help' you to just get into see one asap would be sooo appreciated. tell him the truth here,you are almost at your breaking point sammy. i think he must already know that,espescially when he heard about your phone call yesterday on top of this all. that was probaly a good thing for you that you kind of fell apart on the phone,they KNOW now where you are at with that pain.

just keep hanging hon,i am right there with ya,K? hopefully this will get done as quickly as possible for you. you just deserve some peace sweetie. marcia

 
Old 05-29-2008, 11:35 AM   #35
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Re: Feelbad, Chest/Rib pain

My gosh Marcis, just hearing what you have went through & are going through I am grateful & know it could be worse, of course yesturday I did not feel that way. I had one perco. saved for morning & I did not dare take it. Trust me when I answered the phone I was already in tears & trying to calm down, I am pretty sure the assisstant got the picture. In retrospect I am trying to tell myself this needed to happen because I am worse then what I thought & that other shoulder is messed up.
I swear something is not right, my arms hurt so bad & that dang left hand was cold again this morning, both my hands were so painful, but the left one still is. I am feeling like someone is twisting that arm around my back & holding it there, know what I mean? I am getting some midback pain going around the front to around where the overies are, I swear I have not even metioned it to anyone but you, I feel like as you say a "freak", almost where you would feel kidney pain, but I am being patient wondering if the binder is causing it. Both shoulders & upper back are mess & up towards the neck, it hurts, bad. I am really getting abit concerned & will have to ask cmp some questions about the myofascial problems. God I would be lost without you & now her. you my friend keep me calm & give me courage, even my husband asks about you now, it is funny, he will say listen to your friend on line, the one who found that muscle. He is getting to know abit about some of you. He use to kind of mock me but he really knows how much you all mean to me & will even ask about you guys.
Girl I don't ever want to go through what i went through yesturday, I can't for the life of me remember exactly what I said, but I should really thank that assistant. My husband did tell them when he picked up the script that he let the office know the surgeon saved him a trip to ER.
I did make my appointment for june 16, but I think I told her the surgeon needs to let me know if he wants me to look into PM before that. I think. Heck I could barely think at all, I am telling you I did not know my body was that bad. I have not clue why it seems to be getting worse, I am trying to rest more. Get this, my sister in law reminded me that I still have the oxy left, just a couple, I forgot. Any doctor that accuses me ever ever abusing is out of their freaking minds. I am going to let the surgeon know I realize their concerns but through all of this I have not deveated from his instructions, even with other meds in my possession. If that does not prove to them nothing will. I swear I just forgot. Perhaps it was for the best.
I so feel for you Marcia, gosh as I have said before you are a strong lady. So much weight to carry on those little shoulders of yours. Every time I think of your son I think he is truely a gift from god, it just makes me want to cry. You are blessed, I guess we do get caught up & forget our blessings. I try to remind myself, I try hard not to get down & so far I manage. I am afraid of what the future holds & In the back of my mind I keep hoping the doctors are wrong, that I don't have something that wont ever go away.
My husband is having a tough time & making it abit harder on me. I am trying to accept & he wont. He does know if not for you & these boards I would be a mess, as I have said this is my antidepressant & my saving grace without a doubt. God works in mysterious ways my friend.
I am slowly beginning to realize that it is going to take all of my family time to learn & accept that their very hyper & "take care of everything mom & wife" is no longer in existance.
As far as a PM, well if this does not show the surgeon along with the osteo's opinion then I don't know what will. He has treated me & I am grateful, but I have had enough & I pray with all my being I get a good PM. I honestly think I am getting metally exhausted & I just don't want to deal with another doctor that is a "doubting thomas", you know? The thought of going through what I went through yesturday makes me shake, & I know it would have gotten worse. I know my heart rate & vitals would have went haywire.
I am so grateful for you & rest up because I am once again clueless about pm's & will be driving you crazy.
God bless these moderators who let us continue communicating on this board. I mean every word I put down here, I would be completely lost. I have to call the surgeons office tommorrow for the rest of my refill, I wish I knew the MA's name that I spoke with, I know she told me but I just can't remember I am going to try to find out. God I am nervous, I hope he gives me that refill tommorrow. You know it is actually cruel to have to go through this. I told my husbund we don't even let our pets suffer like this. People just don't understand. Its a shame that you have to suffer uncontrollable pain before you understand. I was on the verge of vomiting yesturday & it just kept taking me back to when I had no control. I have come to realize it this pain gets that bad it takes me a couple days to get control again, do you find that?
I am still waiting to hear if anyone at the pt's has heard of anyone who does the myofascial release, I will be stopping in there with in the next couple days to drop off my survey & written experaince so I will ask again. At this time I am to sore to even drive anywhere at all. I can't believe how my hands hurt, to strange. What do you think? Am I loosing my mind? When you said I was a "freak" like you, you were not kidding. Bless you Marcia, talk to you soon, Sammy
ps I have been looking up the pm's the osteo recommended, waiting to see who the surgeon recommends, I do want to try to speak to him about how important it is that I find someone who can work well with me.

 
Old 05-30-2008, 08:12 AM   #36
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Re: Feelbad, Chest/Rib pain

sammy,like i said before, your ortho already knows without a doubt just how bad this actually is for you or you would NOT be getting the refills there,trust me,so try not to overly worry about HIM,K? he knows sammy,its just a matter of getting you referred to a good PM. you have the docs kind of 'okay' here with any PM that you ARE suffering badly and need help very very soon. so try not to think about that angle hon,its one less thing you should have to even think about,you know what i mean? its going to creep in because of the pain and the fears,but just kick its little butt back out of your mind and deal with the things you can. you already HAVE your orthos support here. he also knows just what your needs are with regards to just having to have narcotic relief right now too. i would doubt seriously that he would send you to someone who wouldn't do that part for you. you DO have a very caring ortho hon. be thankful for that. i think going with whoever he decided would be the best type of "fit' for you would probably be your best choice from just the way i see it. i just cannot realistically see him sending you off like some other patients who are a little too dependant upon the narcotics? you are not in that group hon,he knows that. you have ALOT of obvious very painful types of issues going on in there for him to even think that of you ya know? just trust me sammy,he does know what your real needs are.

i wouldn;t think in this day and age where ins co are actually now paying for myofascial(different back in 03) that it wouldn't be too overly difficult to actually find a PT that just does this. the osteo should know since this is a type of more osteopathic therepy than anything else. it would really really help get some of that inflamation down and keep things a bit more stable for you in there. once that fascia becomes inflammed for any reason,it just affects like everything connected to it and more,ya know? i KNOW what part of what you are feeling is stemming from sammy,that intense tightness(and TPs) you have going on in there IS the fascia/muslce reaction to inflammation itself and the inflammtion at the nerve level too which sends out those signals to the muscle,which reacts very badly and tightens up. believe me,before i started the myo back up again(i had been praying for this therepy again since week two post op)EVERYTHING up in both sides of my upper back,neck and diaphram was tight as a freaking drum. i couldn;t even pull the skin up on the right neck area like i could on the left. it was just that bad. the real sick part was i KNEW what it was i needed the most at that point but could not yet get it just becasue of the surgery crap. god that sucked.

that myo will help your situation alot sammy. that much i do know. it just releases ALOT of overall tightness and intensity of it to a more tolerable level to deal with. it really is an amazing therepy in just what it can do for you and our situations. mine was a severely chronic issue even before my surgery,that just really put it over the top for me and just not being able to kind of 'shake out" my arm like every 20 minutes or so like i normally do,just killed me. just WAY too tight in and up there for too long.

i am wondering about the 'both hands' being somewhat involved here. there could be a few different reasons for that,some could be an actual spinal issue or swelling and pressure from what you have going on,or that binder too could be contributing in some ways as well. you don;t actually sleep with that thing on do you? while it does offer you stability,it is also 'compressing' things within that area too(you have alot of swelling that is kind of being 'pushed' inwards or "back in" on itself,you know what i mean?). ya gotta kind of look at the overall mechanics of what that binder is doing and what it could be causing,thats all. there is a good and bad type of reaction when you constrict an area. but having bilateral symptoms is usually tied more to spinal issues than something else,but you have such a huge amount of high muscle fascia involvement that honestly sammy,anything could be actaully causing this too ya know? hopefully they can better define it down the road for you.

the biggest problem with both our hubbys is they just want " normal" back(just like us,but we know what is actually going on here?). my husband actually seemed to think that when i had that spinal cord surgery somehow things were just going to be wonderful and all "fixed" for me and life would go on. he also went into complete denial when our son became sick too. he would agknowledge that he was sick,just not the deathly ill part? it was all very insane let me tell ya. he just could not accept it for quite some time,til it was"okay,we are in transplant mode now". then it hit him like a wall just slammed down on top of him. but he ,once he grasped the severity of things, was going to donate part of his liver to our son. he had the very extreme liver and physical work up done(was a perfect match in every way) and we had even set a tentitive date on june 26 2000 for it. BUT after things hit the fan with our son in a much much worse way than he had been before, he was re diagnosed with something(primary sclerosing cholengitis) that would make it impossible for my hubby to just be able to give enough liver at that point. so we had to wait,on that list. and we got our miracle on june 7 instead. amazing experience and just insane too let me tell ya. but i digress.

your hubby is just terying to accept this huge change in you and all the things that suddenly got added to HIS life along the way as well. it can be very hard on our familys to have to deal with all this crap too. it does sound like at least he understands the pain you are in tho and is doing what he thinks he can do in this situation to try and help some. believe me, hubbys are not perfect,so ya gotta look at the actual 'things' they do for you in order to really see that at least they try,ya know? there are times where i KNOW mine just kind of "forgets" that i am disabled here and do have some issues?hellooo?lets get the biggest freaking "puppy' in all of the whole wide world for ya.(he was thinking of it as 'protection' for me,without taking in the fact that it is going to outweigh me in like a week now?) but he eventually comes back down to earth and life goes on again. everyone is just trying to accept and adjust and it also hits them hard. they want "you" back too just as much as you do,except you know what your limitations are,they don't,not really. unfortunetly all this crap just comes with the territory. yep,it sucks,but you have not yet gotten good PM yet(and have been undermedicating that level of pain too),so who knows just how things will go for you or what you will maybe finally find answers too ya know? sometimes you just gotta have some faith in the medical world,even tho they don;t always seem to 'get it'. people just will enter your life along the way and it will(already has to a certain degree) make them see things that they didn;t know before. every little bit helps. just hang onto the people you know actually care about you and are trying to really help you in finding answers. these people will also help you to just 'feel" a bit more in control over at least some things,you know what i mean? this will be sammys "team" of people.

hopefully you will be able to get into see that PM sooner than most after you speak with your ortho. i would actually call them and see about getting on their cancellation list? you just may be able to get in a bit sooner that way hon. it certainly can't hurt. tell your hubby hi from me,K? tell him i am really really trying to get his wife back on track for him. gotta stop now the "puppy"(24 weeks now and 76lbs?)wants something. he keeps slapping my arm with the tree trunk paw/arm he has? wow. keep hangin sammy.Marcia

 
Old 05-30-2008, 04:07 PM   #37
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Re: Feelbad, Chest/Rib pain

Oh god Marcia, the ortho released me today, with no more pain meds but two PMs names. Could not believe it (put a thread on PM board). I don't think he realizes how bad this is, if I would have known this I would have just had the osteo call one of the PMs.
Left her a message to see if she can rush getting me in to PM, scared to death here. My pain is so bad. I know you just described it, all the tightness, both dang scapulas, upper whole back & technically I have not reached that 6 mnth mark he talked about. My husband it stunned, I was worried all along.
Now what? I don't even know if I trust the dang PMs this guy recommended. I have heard him decline to recommend PM so I think he realizes I need it but why whould he do this, & what the heck about wihtdrawl, which was my husbands fear.

I aske him last appointment about PM, he knew I was afraid of this. I just don't get it. My husband it really mad & I am just sick with worry. I asked his office if he planned On helping me get in, she said she did not know. Then again I did kind of loose it, I have suffered so much this week. I thought at least he would have forwarned me.
Maybe Its because I asked for a Muscle relaxer but he knew I was trying the flexerril & he is the one who told me Myofascial. I just don't get it. My GP/pcp does not deal with CP at all. I'll tell you I don't trust any doctors after this. I am at a total lose on what to do. Hopefully the osteo calls monday & helps me to get into to PM quickly, no way will she give me my med. though, they don't deal in meds. This guy should have at least let me know I am so mad, I need my MRI back & report but I am going to let my husband call for it. I can't even fanthom how bad I will get with out the perc. So much for this doctor. Let me know what you think, my husband is about to see how it is with no meds to take, god I am so scared. Sammy

 
Old 05-31-2008, 09:21 AM   #38
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Re: Feelbad, Chest/Rib pain

oh my freaking god sammy!! did he actually 'release"you over the phone here or what? that IS just so unbelieveable,really not to mention just cruel and inhumane. he cannot just 'release" you over the phone and not actually make certain that someone has actually taken over your ongoing care before doing that to you. something just doesn't 'sound' right here with this whole thing,i am sure you already know that. he TOLD you he was going to re evealute you at that six month mark,this just doesn;t make any real sense to me at all either.

just exactly how did the 'release" occur? what did they tell you? do you still have that appt on the 16th? honestly sammy,i would call those peole back and simply tell them you NEED to speak to that surgeon about this not have someone dismiss you over the phone like that. i was kind of under the real impression,just based on my surgical experiences that the doc actually has to see you in order to fully eval you BEFORE he can technically release you,you know what i mean? its a basic liability type of issue. hell sammy you haven't EVEN yet begun actual PT on that operated area simply becasue of ongoing post op complications,do you realize that? you still need to be seeing him just for him to keep track of whats going on in an area that HE has a liability in,you know what i mean?

i just do not understand this complete changing of everything this doc seemed to truely understand was going on. it is kind of up to him before the release to assure that someone has actually taken over the continuity of care here and you are getting APPROPRIATELY treated. this just totally completely blows me away sammy,truely. i never ever dreamed this particular surgeon would possibly leave you hanging like this,never. you just really DO need to talk to HIM directly about this. something just isn;t 'right' with all this. something or someone changed things here for you and for him. the thing is,you really don;t know just what HE said or how HE decided this either ya know? you DO have the right to see your own surgeon BEFORE being relaeased by him or her,if for know other reason,being allowed to ask basic questons about your care. this just isn;t the way a 'normal' patient release goes at all. he has been the one continuing to rx things here for you and taking care of that and he KNOWS what can happen with WDs when a patient abruptly stops. what in the hell is going on in this mans head?

this whole thing sammy just doesn;t make any sense at all. for him to just suddenly decide to stop rxing for you(and drop you before even really beginning PT for THAT surgical area) just isn;t the normal way things are done,not when you have ongoing issue the magnitude of yours hon. he just KNOWS what amount of suffering you have dealing with since the day of the flippin surgery and the ongoing post op issues ARE his responsibility here too. something just changed here for some unknown reaon and you need to find out just what that is/was that made him make this ridiculous stupid decision.

a certain amount of actual healing and true progress just has to be met before the surgeon can just say bye bye to a surgical patient in his care. somehow you just need to at this point,talk directly to him himself about this whole thing and also getting HIS help to get you into the PM asap. he owes you that much sammy,he just does at this point. its part of his job to still be evaluating and possibly still treating any surgical patient he does surgery on til they get to a certain point in their actual recovery,sometimes that does go out of the normal guidelines. my first surgery didn;t fuse,i was with my surgeon for well over a year before we got to the point where i moved onto another up at the u of mn just becasue his nurse was a true heartless bi***,and actually lied to me and witheld a real Dx actually in MY copy of me MRI report that explained my ongoing hell. but that was MY decision not his. your surgeon just simply owes you an explanation for what just occued right from his mouth to your ears.

one thing you CAN do on monday is obtain all of your records from this guy and just see what he stated in them about you, it is crucial right now that you know this stuff,and then speak to him about it. if you have to, to just be able to function with this til you can actually see that PM,go to the ER and explain the situation along with your records. this may be your only option right now til you can get someone to cover you fully since you primary wont do this for you(do you possibly think if just in the time it will take you to get in to see a PM your primary just maybe would continue this? it IS a rather extreme circumstance here afterall. its not like he would be taking it over forever,just in the interum). after you have to keep having to go to the flipping ER just to get this managed by someone else because this idiot dropped you before you realistically should have been released,then do it, he will be getting informed about what he is putting you thru here. this is just soo incredibly sick sammy,honestly. he CHOSE to rx for you this far out,HE did that,not you ya know? then to just drop you like that without even beginning to talk about true PM options is just so over the top crazy to me i cannot even begin to tell you how much. he TOLD you six months here. he TOLD you that,so he must have known just what was going on in you to even say that to you at that time ya know? so he already "expected' this was not going to be better til at least then,six months not a bit over three. it just doesn;t make any sense at all what has happened now based upon things you were actually told by him ya know? this is why you need those records hon,espescially seeing the very last record made which would have to be in there if he actually released you.

i am just soo shocked here sammy i am just stunned really. this was not at all expected from the things you mentioned about him,it just does not make any real sense at all to me either. something just is not right with that picture there. you NEED to find out what actually led to this crap,you really do.

i just feel soooo bad for you sammy,really bad. i know how much you were suffering even with the percs and how careful you were to the point of actually undermedicating. its just a sick thing to do to someone post op with your level of pain and unresolved problems still hanging there. i seriously would have a an in depth chat with your primary to see if he can be your back up here just til you can get in to see a PM. this is part of what a primary just does for a patient(they should be an advocate for their patients,its part of their job),if your primary is that bad about this,i would seriously lose him and find a much more caring one. you may not get he help you need from a new one like you were from your surgeon,but you would be with a better overall primary,you know what i mean? the ER is also an option too just for coverage til you can see a PM about this. i just cannot believe this surgeons lost "soul' here about you and what is actually been going on and is still going on that has yet to even be fully defined. obtain those records.

i wish i had better suggestions for ya sweetie,i do hurt for you and know how badly this has has to be affecting you,and i am sooo incredibly sorry for what you are dealing with right now,you have no idea. like i said,i am just so shocked and stunned over this change in him. something is not right there sammy,just not right. just a suggestion where you may get lucky here this weekend? your surgeon just 'could' be the one on call this weekend if by some chance. making a call to his service about what to do about your pain right now may get a call back from him himself. this was the only way i was able to actually speak with my real actual surgeon one time. i needed some x ray results asap so he had to call me back on them when i called. you can ask which surgeon is on call when you call the service too. just an idea for you that would possibly get some ear and talk time with him. you NEED some help and he was the one who WAS providing it. even if to ask about what do i do about the WD symptoms i am currently having?? anything to just possibly be able to get that real talk time with him right now would at least let you know something ya know? that of course is all up to you,but it can be one way. again sammy,i am sooo sorry. hopefully the people on the PM boards can offer up some ideas for you too. hang in there hon,you ARE on my mind today. i hope things are not too over the top right now. keep me posted hon. i care about you,marcia

 
Old 06-01-2008, 07:24 AM   #39
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Re: Feelbad, Chest/Rib pain

Marcia, I have racked my brain & it could be a couple different things. First when he phoned me to tell me he honestly thought it was myofascial damage he did say he did not know what else to do. He was hoping the Osteo he sent me to would help, but even though he said that he never discharged me or said anything further.
Also I know when I called last week & spoke to one of the receptionist she was definantly in a huge hurry & I would not doubt at all she screwed something up, I told her at that time about the pharmacacy & also that I was trying to hold off on upping my meds in anyway, but felt I would have to up the Am dose by 1/2, which would still be well within the instructions. Then when his assistant called the next day to speak to me about the Osteos message I was already in excruciating pain & could barely talk, I let then know I needed a Muscle relaxer to be prescribed to, which he knew I was taking one that urgent care prescribed. Come on he says its Myofascial & I have a hard time believing he would not see where I would need a MR. Maybe he got scared & felt he just did not want to deal with it. My pain was at a bad level all of last week.
I thought the same thing, I am lost with what to do with this shoulder you know. Trust me it is getting worse & the pain in growing, & the other one is getting bad to. I am floored. I did leave the message that the Osteo did believe I needed PM before I could attempt anything else. Maybe that did it. I just don't know. I do know this has been my fear all along & I am not asking for much, he told my husband & myself 6 mnths & it has not been 6mnths. I ask about PM the last appointment (thank god my husbund went with me) he should have did something then or even when he called with his opinion of the DX he could have recommended PM if the Osteo did not work out. I don't know what to think. Of course the first thing I thought was this guy does not believe me, but then after talking to people on the PM board surgeons do this.
My husbund is furious & is calling tommorrow, I just cant, I think I would loose it. He is worried about withdrawl & wants to know why the surgeon is not helping me out till I get into PM for that matter why did he not offer to help me get into PM. The person who called said he said to choose one of the two PM's he recommended. When I ask her if he was going to help me get in, she said she did not know. I am shocked, even when his assisstant called last week she said I should not be left in this pain, I would guess she would have wrote something down. Perhaps he is feeling pressured about PM, I just don't know. Now I will ask you the same as I did the others on the PM board, he works closely with the one PM, should I trust that PM? I am totally lost.
Thank god the people on the PM board helped me figure out a regiman to follow with what I have at my disposal to get through. Oh god what if I cant get into PM soon?
I cant go to ER, heck I am still paying bills from the past. my GP or PCP I just don't trust them at all, they made it clear they don't deal with CP, when my rehab doc did the same to me right before surgery they helped me out, only because I brought in my meds to show them how responsable I am with them, but they made it clear that was the only time they would help. & to boot my last visit I kind of ticked the doctor off, he was giving me a dx I knew was wrong & I was not happy. I showed all the meds I never took because everytime I go in there they always bring up that I am a cp patient & blah, blah, blah...I swear to you all these doctors around here are scared to prescribe anything. I wonder if its something has happened in the past. Here I am careful to a fault, even been told I was undermedicating my pain & can't find help. I kind of knew if I ask for anything I was taking a chance. You know I felt by letting him know I was going to increase by 1/2 in the morning I was being responsable, that he would not freak if I ran out abit early, I know why everyone is afraid to talk to their doctors when they need a change with their meds. I will never make that mistake & not talk directly to a dcotor or PA again. Live & learn, but I will not make it if the chest starts acting up, because there will go my breathing & heart rate. I am dealing with more then just pain here. I am scared & don't trust any doctor right now. I have to choose a PM by tommorrow or see who I can get into, I hope the osteo helps me out. I swear I sometimes think these doctors are not taking me seriously.
I don't know if he is obligated in anyway to help me but I know he did not keep his word. I know I told him this was my fear, but you know I wonder if the guy heard half of what I was saying. How the heck do I find a Pm I know will keep me on meds while looking for other alternatives wtihout looking like a drug seeker, you know? What do I come right out & ask? This is a mess. I am trying hard to just not panic. My husband is going to be doing the calling & infact we were told in the past the surgeon had to wean me off, Could he be doing that with no warning at all? I appreciate his helping me thus far but my god, he could have called me his self or warned me. who the heck is going to tell me what to do about these shoulders, should I do PM & then therapy, you know, he really abandon me here. Let me know what you think, Sammy

 
Old 06-02-2008, 07:50 AM   #40
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Re: Feelbad, Chest/Rib pain

mornin hon, i do hope things go well today for you. as you probably have already seen,i answered your other post in PM. like i mentioned there sammy,i realistically cannot imagine that by simply asking for the type of med that would possibly really help with at least part of the myofascial pain(been documented and he knows this) would have triggered this type of response. valium has what has really helped alot with my ugly little process up here. it would't really be that big of a deal ya know?

i really am simply hoping that given how really messed up that phone conversation was the other day having to do with that fill,that this is all some kind of really screwed up misundertanding or miscommunication going on and nothing more. this just makes NO sense at all sammy,none. hopefully you will find out whats up when that call gets made. there are just sooo many reasons for him to not release you yet that is just seems insane that this could have happened the way it appears to be. your post op course just has NOT been normal by any stretch of the imagination,there is still his responsibility here in making certain that shoulder is getting the right help and follow up for the biggest reason. it IS a liability espescially the way this "release' seems to be here.it just is not the norm given what you have going on,not yet anyways. there is still too many things this surgeon needs to make sure of and that you have the right to follow up with him for. its just wayyy too soon for you hon. just when DID he last even run thru all your ROMS sammy? thats very important.

i was VERY relieved to know that you never thru out old meds sammy,wow thats a lifesaver. you just never know whats going to pop uo to have to deal with,i never throw anything away unless it is more than about a year old. by the way,any actual refills on a Rx that is more than a year old,most become invalid at one year so i wouldn';t even try to get a refill on something that is that old. i know like at the WG is use,it always says right on the bottle. good til and whatever the date is like a year from the original rx. after that the script kind of expires?

i just feel sooo incredibly awful for you,really sammy. i am hoping this is not what it appeared to be given the things that this ortho just has told you inthe past and the fact that he has simply accomodated your pain til now. why in gods name wouldn;t he just continue til you can get into PM? like i said this makes no sense at all to me either. it just dosen;t 'sound' to me anyways like the ortho you have been telling me about ya know? either "someone' had that talk with him about Rxing or there is a huge miscommunication going on here.i just cannot realistacally imagine things any other way that could possibly explain his huge turn around on you. i mean geez,i used up an entire paragraph telling you to trust this guy,thats how much i really thought he totally understood where you were at and how you were afraid of THIS happening to you ya know? god i feel like an idiot now. i AM still hoping that this was just not what it appears to be. you have too many things not yet 'done' that you need him for for him to let you go like this. until your shoulder simply gets to a certain point,releasing you just seems way too off the map here and too huge of a real liability for him too.

i am glad you posted on the PM board,you did get some great advice and just a sympathetic cyber hug from people who know what you are dealing with.

i will be checking back hopefully later today to see what takes place on the phone with that surgeon hon. i still am just shocked if this is what you said. it just doesn't make sense at all ya know? and DO ask that osteo about the overall philosiphys of the PMs and what they use as far as modalities to manage chronic pain. she just knows what your real needs are right now so asking her wouldn;t be unusual,espescially given what may have just taken place,ya know? you just really NEED that continuity of care right now,she knows that. and that surgeon owes you a big hurry up get her in to PM phone call too. most surgeons,when their patients still need the ortho oversight,will refer to PM for management but STILL continue to see their patient to a certain point,you have not yet reached the 'safe' point to even be considered 'released" and for him to not be following your progress. something just is not right here hon. i do hope you get some good solid info today. please keep me updated when you can. i will be awaiting the next post sammy,i sooo hope things are okay there. i am thinking of you,marcia

 
Old 06-02-2008, 10:25 AM   #41
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Re: Feelbad, Chest/Rib pain

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

 
Old 06-03-2008, 09:43 AM   #42
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Re: Feelbad, Chest/Rib pain

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

 
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