Feelbad, Chest/Rib pain

[sammyo1]

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

[feelbad]

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

[sammyo1]

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

[feelbad]

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 pissed 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

[sammyo1]

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.