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Old 06-04-2008, 06:24 AM   #1
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both shoulders/appointment soon

Marcia, I am kind of shocked at how the surgeon released me to, but he did tell me on the phone there was nothing more he felt he could do. I am worried about both shoulders. The other shoulder is acting up. if I raise it in my sleep it will wake me up with the pins & needles pain, to much. Cant lift either shoulder in the morning. Should have seen me this morning, could not bring my arms up to the counter. I went to lift the coffee pot & almost dropped it, it felt to heavy to lift with either arm. Cant bring them out from the side, if I keep them tucked in they dont hurt as much, of course then your limiting the shoulder movement. Everything is super tight in that area, cant even bend my neck to make my chin touch my chest, it just hurts. Perhaps that is how the myofacsial works, all new to me.
I am upset that he discharged me this way & did not check either shoulder. I dont know. Maybe he is upset that I did not continue to try the Osteo. But it was making it worse. Or maybe he was feeling pressured about PM. I think I am going to be writng him a short proffessional letter when I am into PM.

I am mad a that office for not giving the records to my husbund, I have every right ot them. So know I have to call & request they have them ready & make another trip in. My husbund said they said it would be easier to fax them to the PM themselves, to bad.
I am nervous, you know getting into to PM this fast sounds to good to be true, my appointment is monday. It is not the PM I wanted but if I do not like this guy I will switch as soon as the other one starts taking my insurance, which they assure me he is trying. He has a great reputation for being really compassionate. He is also the one that treats the Myo & RSD, figures.
I am worried this PM will take me off my meds. I dont want anything stronger but maybe to try some other things, like the trigger point injections, & I really feel I need a good MR. I will see what he says, but you know I am to the point I feel I have to lay it on the table & see what happens. I don't trust doctors at all & I am tired of feeling like they think they are doing you a favor when you are paying them. I think I am going to put a call into my husbnds neice today she is a nurse at one of the hospitals & see if she knows of a good PM, I just want another name just in case. you know?
The surgeon could have still checked those shoulders out & sent me to PM. I am pretty upset over him not telling me what to do about that shoulder. It bothers me that he may not believe my pain level, I cant see any other reason for this, but he give me another script. you are right about that, he should have at least evalutated me. Not to mention I am abit upset with him for not telling me about the spot showing on the liver in the MRI, dang doctors they dont feel you hve the right to know about your own body.
Thats ok now that he released me I dont have to put up with his office & they have a big surprise coming if they dont get those records ready.

I am nervous of course of the PM appointment, all his receptionist kept saying was he is really strict. Lets hope that does not mean is one of those doctors who thinks he is god. I have no problem with him being strict, but I don't want to be forced of pushed around. At this point I need at the very least some understanding from a doctor. Like this is new to me & I want to become eduacted about what I have you know. I cant handle anymore doctors who treat me like I don't know my own body. I hope he does look to see if there are any other problems such as RSD, & I will pop on that board.

I cant figure out why I feel like I am getting worse when I am taking it pretty easy. I am worried about the lose of use in both arms. Man if this doctor was to take me off my meds I would be in big trouble, it is not just the pain, I just cant breathe. I am hoping I can even get an explanation as to why that happens. Pepper pointed me to a couple other people who have that problem with Myofascial. That is why I really wanted into the other PM, he specifically lists Myo. on his website along with RSD. If I could afford it I would go to him, but I just can't afford the out of pocket expenses, they have assured me he will be taking my insurance again, but they can't say when.
Can I swicth to him in the future if I am seeing another PM? I mean I know PM's are differnent & I don't know if that would cause me any problems.
I have alot to learn about PM's & pain mangement & also myofascial. I really feel like a fish out of water & I am the type of person who likes to be informed. That my friend can be a problem with some doctors. They like to take their 10minutes with you & thats it. Well thats not good enough for me anymore. I want a choice when it comes to my care, you know. This is my future I am talking about & I swear this is getting worse & it worries me.
I feel like I went through that surgery for nothing. That surgeon could have at least told me what to do you know, like seek PM then get back to therapy & he could have at least looked at the other shoulder. Now of course I don't trust him & cant believe he would leave me in this mess. A little guidance would have been nice. He just gave me the diagnosis & dropped me. I do agree he should have seen me one more time check the ROM & explained PM abit to me. I am disappointed in him because I trusted him. I realize he could not go on prescribing my med. & realize he can't deal with the myofascial but there was a more professional & sympathtic way of handling this. I told that office I was having big problems with both shoulders. So I do feel he was neglegent. Some of those office workers should loose their jobs. When I am paying for a service I expect respect at the very least. I swear doctors & office staff seem to forget they are getting paid. I have no clue why he broke down & gave me another script, but he gave me enough for a couple weeks, if I dont increase them.
God Marcia you don't think this PM would take my meds away do you? I have heard of some doing that. I think he will see that I am not there just for narcotics, I am telling him I really have a healthy respect for narcotics & am fearful of even taking anything stronger. I don't know how else to make him understand. I have some left at home like acouple oxys, but I am fearful he will make me get rid of it all & that I am not doing after being left high & dry by the surgeon. I have a couple of valium & that type of thing, so its pretty easy to see I don't abuse that stuff. I do feel I need something on that line still at times when the breathing issues kick in, I just don't know how to approach him about it. You would think he would see I respect the meds because they are from awhile ago, but you never know. I need something. I am ruining my teeth because of grinding & clenching with pain. Even my pcps office said that between my stomach & teeth they felt I needed something to help relax me especially at night, like a fool I declined at the time. The rehab doc. is the one who felt I definantly needed something like that because he just said I could not relax, you know having a hard time accepting the pain & my limitations, he also felt it would serve as a MR.

With this new PM who knows. I can tell you I will not be treated like some throw away anymore, I dont care if I have to go through a few PMs till I find one that has respect & compassion. Perhaps I should have made additional appointments to interview. I am stuck I need one who is going to at least give me my meds before this script runs out. How does that work, how many appointments do they take to get to know you enough before they treat the dang pain? I am stressed I will tell you. I am definantly worried about this getting worse, it is so strange, I can feel it, almost like it is spreading. Its not like I do nothing at all nor do I do to much, I cant, so why are both arms so bad? Weird. I am praying this PM is a good match. Mean while I will keep looking because I need a back up just in case. I hope I am doing the right thing. I will go on the RSD board today. Sammy

 
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Old 06-04-2008, 08:45 AM   #2
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Re: feelbad, both shoulders/ appointment soon

all you can do right now hon is just go to that appt,be open and honest about the pain,the overall insanity of it,the breathing issues really NEED to be mentioned to him too(he also NEEDS to know what was pre existing BEFORE that surgery too). and see how the initial eval goes with him,ya know? you unfortunetly wont really know how it will go til you go thru at least that initial eval from the PM himself. i cannot imagine,with everything you have going on that a good knowledgable PM would want to take you off of something that is about tha only thing holding the pain and you in some control ya know? he may actually want to place you on the longer acting form of the oxy too. alot of PMs just wont Rx any tylenol based meds at all,i know mine wont. they like to use roxicodone or oxy IR instead? which is good for the liver and kidneys.

SOOO speaking of the liver,what IS going on there? i never heard you mention this before til i caught a glimpse of it yesterday in the PM. i was just about out of time on my PC cuz things had to get done so i didn;t have the time to ask then. whats up with that? did something actually show up onthat MRI they did? PLEASE fill me in hon.

one thing about your medical records sammy is they cannot just "give" them to you like right now? you first sign a release of information(you can sign one AT the office or just call them and ask for the release to be sent out to you) then just fill it out,and there is usually a place to check off what the request is for? just check the for personal records or something like that box? then you send it abck to them and they have an actual sevice that comes in like once a week that only does record copying,the ortho keeps the original and you get copies of them. i usually get mine within about a week or so. i would ask for EVERYTHING in your file from them including any and all test reports like the MRI or any other stuff he may have checked. but ask for ALL records in that file. you DO have a right to just keep your own files at home for your personal records. i had to start doing this many years ago just to try and stay on top of my and my sons many conditions and the docs we have to keep seeing. but it IS kind of a 'process' in getting them,just like i mentioned above. you can also request them if you wanted to try and get on disability. this is really what prompted my very first "getting all my records" crap? disability turned me down the first go round and it just shocked the hell outta me since i was just pathetic at that point,so i started getting my own records just to see what disability saw,and my my alot of things i just assumed that were in them,weren't. i was kind of suprised at what had not been documented or left out with actual Dxs my docs had made? there are always some level of mistakes in everyones records since they do have to be transcribed from the docs ramblings into his little recorders. the docs can confuse patients too,saw that one in my records too. there are just many many real reasons that someone really just NEEDS to see their own records. with what you have going on right now,you simply NEED to be keeping all this stuff inyour posession. believe me,it really does help alot in many situations. even if you should have to make an ER run or some other medical emergency comes along,i keep my more recent stuff,including all tests that have been run more recently in this little expanding folder that i take to any ER visits or all doc appts. that way when someone forgets to fax something from a nother doc to the one you are sitting there seeing and they don;t have very important info,you just reach into that folder and tell them to make that copy off yours. just NEVER give away YOUR records to anyone. also,bringing that info to any actual ER visit if it should happen,they already have that set baseline to work from that you just gave them. it saves alot of hassle and time just to be able to give them the 'last" info to start from.

but you DO need to obtain them sammy,just to read thru them and really see what this orthos overall 'impressions' of your ongoing situation were and are right now too. just call the office and ask them to send out that release of info for you to obtain your records. they will HAVE TO comply with that request. you just have that legal right.

i am relieved that you were able to just get in to see anyone that quickly hon. like i said before,if you don;t like this set up or the doc or don't feel they can offer you what you really need in the way of modalities there,thats all you have to tell them and you can move on to another. if they simply cannot 'fit' all your real needs,that IS reason enough to just tell them and seek out another who can. just ask that PM on that visit,what can you offer me thatwill best help with what is happening to my body and manage the pain to the best of your abilitys. i am just suffering here and NEED your help with this,i feel like a freak right now(cuz we both do). i have so many things wrong that no one seems to be able to explain to me or even begin to try and manage,that type of thing? then ask him,'can you please help me figure this out"? i just need answers and ways to manage the pain that will allow me a life. this just IS realistically where you are at right now sammy,it just is. he just needs to know how much you need his help with this. make sure he also knows that you have not even been able to get that shoulder PT done simply becasue everything is always so inflammed up and in there. my PM is really a very caring compassionate guy,unfortunetly i only see him when i need actual procedures. the NP is the one you see for any real follow up visits that are just required when you are getting the stronger class II meds.

i do think you will be okay hon. its just that fear of the unknown that is wearing on you(and too many things you just cannot control right now). that will pass once you can actually possibly get some answers from this guy and get a good plan to manage your pain set up with them. all you can do right now is just prepare and make sure you have some good questions for him,and DO ask about what he may think of your symptoms and what may be the underlying cause,the possible SNS angle? if he is indeed an anesthesiologist,he WILL have an idea based upon your symptoms,trust me. some are rather obvious like the sweating? make SURE he knows that that was actually going on BEFORE that surgery too.

i gotta fly for now,sorry. the puppy has shots in a bit so i NEED alot of time just to get ME so i can go out and not scare the people out there in the real world. i still have to answer CMPs post about what IS craniosacral therepy,oops. she posted it a weeks ago and i just haven't been able to get back to it yet. feel bad about that since i think it could possibly really help her situation too. you may be able to try this too once things can calm down enough. it works best when integrated with the myofascial release. its a great combo for what we have wrong up there? but your still not fully Dxed yet so once that all gets better defined,you will know what will work best for 'your" particular process. just keep a hangin sammy. i am right there with ya. let me know about your liver issue? take care hon,Marcia

 
Old 06-04-2008, 09:20 AM   #3
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Re: feelbad, both shoulders/ appointment soon

Sammy, I am very sorry you are going thru all this. I am very hopeful for your appt on Monday, and I hope the pain doc is great, helpful, and understanding.

I have myofascial pain, along with terrible tmjd, and fibromyalgia, so I battle chronic pain everyday. Actually, pepper, pointed me to you because I am having some issues with my back, right side by my shoulder blade area, and the pain shoots when I move and breathe. It is horrible, and it is not getting better, it is staying, and getting worse. It has been over a week. Do you have any idea what this is, or what I have done to myself? I am trying my best today to rest, it is hard when you have a 2 and 4 year old little boys, but they are pretty understanding. My husband, I hope, understands, I cannot do much with this back thing. I have a hard time with it everyday, but now it is almost impossible.

I have asked my doctor many times, maybe 8 times, for referrals to pain management, rheumatoid, and neurologist doctor, but he feels he can treat me. I like my doctor, he is great to me, but I would like more answers, and to build a team of doctors. I am 31, and it has now been 10 months, and I am not getting better. I am scared that I am going to have to battle this forever. I think you are doing the right thing, and for sure keep some pain doctors in your back pocket, just in case.

Take it easy today, and I will be thinking of you, and praying for your appt on Monday to go great.

Kassandra

 
Old 06-05-2008, 05:54 AM   #4
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Re: feelbad, both shoulders/ appointment soon

Kass, did you do something to aggravate that area? It sounds like it could be musclear. Hve you tried Icing it? If not do so, & if you dont take & can take one, take an anti infammatory. Marcia is really knowledgable she will offer her opinion I am sure. I can't imagine raising little ones with cp. I suffered migaines when mine were little it was the toughest thing. I also have the TMJ so I feel for you. The dentist said my teeth are such mess for it that he would not attempt any cosmetic work at all. You should be able to find a ice pack that you can secure in place if need be. Try it, even using an ace bandage. Also try to kind of keep that arm rested abit. My sister just pulled a muscle in her back & the doctor told her at least 12weeks to heal. I sure sounds like there is some inflammation going on. Also check it out with your doctor, perhaps he would recommend a sling to try to keep it from moving around so much, it does make a difference, you can try rigging one up for abit just to see how it feels, what do you think Maricia? It would be worth a shot. You may need a muscle relaxer if you are not on one because you need to be able to take some normal deep breathes, I know sweetie that is agony.
Look into what I have suggested, I would definantly try to immobilze that arm to see & ice,perhaps rotate with moist heat. Let us know how it goes.

Marcia, First & most importantly how are you? I hope you got something more for your pain. I was worried about you. Let me know. Dang shoulders have really been a problem for us.
you are not going to believe this my husband ran into a couple he knows & the lady goes to a PM, the same office mine is in. She said Do Not go to him, he does not like to prescribe pain meds at all & is very young. She said go to the one she goes to & that he is super nice, at least to her. I am calling today to switch appointments. She even offered to give me her appointment whic is June 9. Of course I told her no, I could not let here do that. Thank god I found that out. I would have had another panic day. She also said she cant believe I am not on a good muscle relaxer lke soma. Nice lady, she gave me her number if I want more info. & sad the surgeon could have caused more harm then we realized by playing with my med. I just want some relief you know. tired of pain, heck no postion is comfortable to even lie in anymore.
The liver showed on the MRI, did not know till my husband brought the report home. I am sick of these doctors & if it did turn out to be a problem he will be speaking to me & my husband. You would not believe the stories my husbund heard yesturday, lets put it this way I have been praying for him to understand abit more & I think at least for know these stories from his coworkers & friends will help him abit more.
I did ask the dang office to have the release ready to be signed, they just totally ignored my request. Who the heck do they thing they are?
I could barely drive to the corner yesturday & having to back to the surgeons makes me so angry. My arms are just so dang sore. That surgeon really left me not knowing what to do with these shoulders & I swear they are getting worse. I could not believe how it hurt to use the steering wheel. I know part of it is the weather. Every since it has been rainy & damp the pain has increased. Do you think I should try to use the pulleys to exercise these shoulders abit? I am clueless.
I can only worry about one thing at a time so for now I will tackle the PM issue then address the rest. The lady my husband ran into said if ever I find myself in a bind with the meds to call her, she said it can jeapordize more then just pain control & she knows how it feels being a CP patient. She is a blessing, I hope I can meet her soon, she & her husband are friends with mine. He visits alittle pub & know he feels he is justified in his visits (ha) because that is where he met them along time ago.
I hope you got somewhere with your doc. visit. I will be waiting to hear.
I put a post on the RSD board, I learn more from the boards then anywhere.
Perhaps you can give your opinion to kasses concerns to.
I will check the PM board for an update on your doc. visit. Sammy

 
Old 06-06-2008, 06:45 AM   #5
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Re: feelbad, both shoulders/ appointment soon

sammy,remember when i said that certain people will just enter your life at certain times when needed and things will happen becasue of that? well,it just did,again. what a crucial piece of info for you to just "happen" to find out about right now,huh? things just play out that way they are suppose to hon,they just do,somehow someway. tho i do feel badly for the lady,she just gave you some really really important,possibly life changing info. and what a great friend she could turn out to be. the fact that your hubby spoke with these people is wonderful,now he sees for himself just what CP can do from others viewpoints,not just yours,ya know? he NEEDS different perspectives other than just what you are dealing with to just know,himself,that this IS a big issue that you are not alone in,ya know? he can talk to other people who can possibly help him to better understand what you are going thru and have been theu. PERFECT,dont cha think? what a great thing to have just "happen". good deal sammy,for both of you(doesn;t it just 'feel" good to feel good about something for once?). just keep looking for those positives and hang onto those. thats what i do hon. there IS that trade off,you just have to look for it sometimes,and then at other times,it slams your hubby over the head kind of thing,lol. its just really great that "he" actually ran into these people. what could be better?

i would try and change to this doc too hon. getting a word of mouth referral to ANY good doc for anything is usually much better than from any other source. this was a ment to be moment for the both of you ya know? you just needed a bit of guidance and direction,now you have some. feeling a bit more in control yet? every little bit helps hon,it just does.

so.you DID finally get that release signed then? if so,thats great,it will get the process rolling. i do know how hard it is to drive,owwieee. i normally have my car(pt cruiser,got it for my 25th wedding anniversary from my hubby a few years ago,what a freaking shock let me tell ya.mr clueless even made sure it was SILVER for the silver anniveray thing? unbelieveable,didnt see that one coming at all)which has the shifter down on the floor,not the sterring wheel? well i had to use his truck when he took the "zoo' up north with him and my son,and wow,what a horrid thing to have to drive with what we just had done. just trying to shift off the wheel almost killed my arm and shoulder. it was PAINFUL let me tell ya. i never missed my little baby car so much in my life til then. i ended up having to actually use BOTH arms to just shift from park. geez. you just take sooo much for granted in life ya know? til you lose it or almost lose it and can actually get it back,then the "appreciation pops in. i am grateful and so thankful to the people and the surgeons and docs and lets not forget the amazing man with the hands too who all keep me going these days. i am sooo hoping this other PM will just be that perfect fit for what your true needs are right now. did this woman say whether or not this guy is actually an anesthesiologist or not? cuz YOU sammy do need one right now,for alot of reasons. i think an anes would be able to really help with your pain issues and the Dx of the SNS involvement too. you just need one at least for now anyways.

i for one am very happy to finally hear some GOOD news from you sweetie,it HAS been a while ya know?lol. this happened for a good reason. so go with the flow and see what happens from here. did the surgeons office give any clue as to how long it will be before you get the records for YOU? normally,like i mentioned before,depending upon when 'their" copy co comes in,it shouldn;t take more than about one week. there just used to doing this stuff all the time. it really is a badly needed thing here hon,you just need that insight into this mans impressions of your overall condition,from the start/initial eval to end/with NO eval,geez i still cannot get over that crap. too stupid really,from a liability standpoint alone ya know?

i have to tell you about my 'day' yesterday.what a 'bad" bad day i had. i will post it in the PM. i am going to have to speak to my PM directly whern i get that symp block done from him. things started off bad yesterday morning and just went downhill from there. we never even got the chance to (me and my NP ) to really get to what i needed to actually talk about with her mostly. i took a trippy almost fall that killed my RSD knee,again. like i said,in the PM,i don't have the energy to post it all twice right now,lol.


Kass, you have the right idea here really. despite how great any primary doc is,they just also have to know when they really NEED to refer you off for certain types of testing and just to see the right types of docs for your actual needs too. i love my primary,but alot of the crap i have had to deal with has been wayyy over his head and he just knows that and doesn;t "try" and pretend that he just can take care of everything for me when he simply can't. THAT is what a primarys job is kass, to just coordinate your real healthcare needs,not simply try and treat something that has not really beed evaled by the right types of docs. YOU have the right idea here,he does not. asking for a referal should be indication of enough for any primary to just do that for you,espescially with what you have going on that just needs better definition so you can obtain the best types of treatments for your pain processes. right now,you are not getting that level of more specialized knowledgable care. you DO have real needs here to be seeing other docs for evals of the things that are creating your situation right now.

what types of real testing has this doc referred you for so far,anything? MRI? at least maybe on that shoulder area. you REALLY DO need the more specialized knowledge of a good PM doc who do things for you that this doc simply cannot do at all. PMs just have a much wider array of PM modalities availiable to you that in some cases,can even casue a definitive4 lowering of your overall pain just by using the tools for that particular job. my whole body is a mess right now too with alot of my bigger issues just stemming from the fallout of a spinal cord injury. i have also had to have six surgeries and an anuerysm coiling dfone all since 2001. beleive me, witrh out the knowledge of my great PM,i probably wouldn;t even want to be here right now,he has helped me THAT much.

seeing a rheumy doc at the very least for that eval and consult and him doing this huge amount of bloodwork on you that just is the biggest most comprehensive type of blood/labwork i had ever had done at any docs office that just tests for anything and everything that could possibley cause some level of inflammation in a persons body. four full pages of very in depth labs get done by rheumys,just becasue they are trying to narrow down any and all possible players when someone has an inflammatory type of condition going on. there is always a very good chance that something other than what you were originally Dxed with is actually something else? there are just sooo many different things that could be rsponsible for any inflammation within areas of a human body that they really DO just all need to be at least ruled out before any doc simply "settles' for a Dx.

i seriously would be kind of demanding at this point that your primary at the very least,get you to a good PM doc in order to really get the best types of treatments for YOUR particular pain processes. the PM could also refer you to a rheumy if for nothing else,that comprehensive blood study. beleive me kass,this labwork is huge and would rule out alot of things for you that could be giving you symptoms that may have been attributed to other things too.

knowing just what types of testing you have had and on what would really help me to help you. and what docs made your original dx on you? one big hue thing about when you have pain in your shoulder? it could just be from SOOOO many possible issues up there you wouldn;t believe them all if i told you,lol. the list is just that long of possible triggers.anything from some sort of inflammatory generated issue to a torn tendon or pulled muscle,bone spurs within the joint or a host of 'itises'. like bursitis tendonitis and others. this are just NEEDS an actual Dx before any real treatment can actually begin. hopefully you just 'pulled' something or some other minor issue. but if you have been Dxed with fibro(who did that dx on you,what type of doc?)it could also be contributing too. you simply DO need some referrals done by your primary,he owes you this AS your primary. this is just part of what any good primary is supposed to do when things are above his head. you two NEED an in depth chat here on just what YOUR very real NEEDS are right now. a good PM would be the very best place to actually start with.

i do hope things get better for you soon. but you DO deserve to be seeing the right people for your issues too. don;t forget that part. if your primary will not simply do his job for you,no matter how great you may think he is,he simply is dropping the ball on you here. you may need to switch to a better more informed primary who just knows how to do his or her job for their patients ya know? you need things here that he needs to just do for you kass,really. i do wish you lots of luck with getting that primary to see your real needs. please let us know how things are going hon,Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 06-06-2008, 09:30 PM   #6
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Re: feelbad, both shoulders/ appointment soon

Sammy,
I've posted in the past on my decompression surgery. I was doing some research on the internet about another frustrating health problem that I have and am searching for answers on. I came across some detailed website information about a condition that had alot of the symptoms that I have seen you post on this thread. I have no personal experience with this and it might be completely irrelevent, but I thought it would be worth passing on to you. The condition is called costochondritis. It is an inflammation of the cartlidge that connects the ribs to the breastbone. One form of it can caused by a bacterial infection that develops after surgery. (If that is the case, they recommended IV antibiotics to help.) They said it could last 6 mos. to 1 year with the worst symptoms early on. The inflammation looks to appear between the 2nd and 6th ribs. Some of the secondary symptoms listed were pain, tenderness with swelling and a spot that really hurts. They also listed radiation of pain to the arms, shoulders and back to the spine. The pain can increase when you move your trunk or take deep breaths.

 
Old 06-07-2008, 05:38 AM   #7
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Re: feelbad, both shoulders/ appointment soon

Mountain bless you. I have diagnosed with that a few times. I had it before surgery but it is constant & no one could tell me why. On many days you can see a couple of my ribs just sticking out, strange. It can throb & spasm like mad. I am in a binder for now for those ribs to try to keep them from moving. If I do to much, like yesturday then they will act up the following day. Tons of swelling & spasms from the shoulder through the chest into the ribs & around to the scapula. To think I went through that shoulder surgery & still have all this is hard to swallow, but I do think the surgery had to be tried.
You are a sweet heart for thinking of me, bless you! How are yo doing?

Marcia, I am so very sorry you are suffering more. Girl you are really getting hurt lately. Funny if we were normal this little falls & hits would be nothing.
When it this appointment with the PM? I am not sure if you mentioned it.
You have good relationships with your doctors, correct? I cant see them letting you suffer, they better not. We are just not doing well with this post op crap are we?
I am in agony today, did some work yesturday & forget & stretched when I woke up this morning, I can't do that. It will set everything off. I am tired of this pain. That chest is a doozy & when those spasms hit I can't handle it. I hope this PM gives me a good MR & god I hope it works. Laid in bed with tears just rolling after I stretched, I could have kicked myself. The lady who recommended me to PM said if I want she will let me try a Soma, of course I am afraid of meds but at this point I would at least try half.

It was so funny how my husbund talked to two different people on the same day with problems like I & we are having. I know god answered my prayers. I know my husband & he will have to be reminded. But I will take what I can get.
I have not made it in to sign the release yet, I am so mad at that office.
They had no right to do that. I am done dealing with doctors who take advantage & treat you like you have no rights. It can be hard for me to get in there & my husband is starting longer hrs next week, so I will have to try to get in there. No one does their job. The insurance company was suppose to send me paper work to help make my life easier because of a supplemental plan I have. Never got those either.
I am praying so hard this PM is a good match. Some days are so hard.
I am glad to have met this lady. My husband has known this couple for awhile but I have never met them. Hopefully soon. I told her about this site. Hopefully she tries it out. I honestly believe it will help her. I don't tell anyone I know the specific site. My family knows I have my friends on here, but this is personnal, I feel if anyone like outside my husband & girls were to read it that it would be an invasion of privacy. I don't like to share everything with everyone you know?
This is my sanctuary, my husbund will ask how is so & so? but he never really reads the posts. He is getting to know a few of you.
The lady I recommended it to agrees, she feels the same, that some things are just to personnal to share. It is a different life when you are in chronic pain as you well know. I am still trying to accept this & not ready to share alot.

I'll tell you this is getting worse & I hope the PM doc. can anwer some quesions. My hands are really being effeted for some reason. If I put them together for like prayer I can feel them throb. All of this is to strange.
It scares my husband at times when he sees me like this. I feel like this is not real, ya know? Who would have thought. My husbund just bought a minivan off my sisterinlaw, she let us have it for half of what she could have got for it. It is so roomy & so much more comfortable for me. It like a luxary version so I love it. It is just as good on gas as my car so thats a plus. The car you have really makes a difference. I just love the space that it gives me, like leg room. Even though I don't have much to my legs (ha). I am like you, tiny.
Thats us, tiny freaks! Oh girl I don't know what I would do with out you.
So you take care, no more accidents! Let me know when you PM appointment is. Sammy ps, yes this doc. is a anasthesiologist

Last edited by sammyo1; 06-07-2008 at 05:39 AM.

 
Old 06-07-2008, 06:13 AM   #8
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Re: both shoulders/appointment soon

I found you.....it sounds like your pain today is as bad as mine...I've been up since 4:52am...and when Gary wakes up I'm showered only because the hot heat on my neck...thanks for all the nice words your have written about me...this seems like this website will help me mentally......Gary married me when I was 27 and we meet at 24...he's 20 years older than I.....so just imagine this beautiful healthy 24 year old and then boom the accident....I've never been the same....he's getting better at accepting this after 5 surgies and cervical cancer inbetween but I have to praise him this time after this last neck surgery....I feel terrible today....maybe the weather....I don't know...I'm depressed, just feel like crying today....but I can't I know I have to be strong through prayer....I hope you read this...and how do I find people with neck surgies on this website?....thanks sammy

 
Old 06-07-2008, 08:14 AM   #9
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Re: both shoulders/appointment soon

hi nitro sammys friend,and welcome. the spinal boards here are really great,just scroll on down to them WAY down below,its all in alpha form here so its down there. i too have a nightmare within my c spine and upper T. what is your current status with this mess? just read my signiture at the very bottom of my post here when im done and you can see where my c spine is kind of at,along with spinal cord injuries to boot. ain't life grand? only have a bit of time here so i gotta move on to sammys world,but glad you found us. marcia



sammy,all you have to do hon is just CALL that stupid office and ask for them to SEND you out that release form,fill it out and send it back,you do NOT actually have to show up there in order to get those records at all. it will just take a few days more,thats all. at least you will get the process a rollin. you just really do NEED to see whats in those records.

ya know,just for the heck of it, what MR wrote about the costo really makes alot of sense,have you had any type of test that would actually state whether or not this actually ever totally cleared from your body if you did indeed have it at one time? you never mentioned actually being dxed with that before,there just could still be the possibility that if this actually needed IV anti Bs to clear,it could still be causing the underlying issues too ya know? my hubby had this caused by the cartaledge pulling away from his rib cage,but it wasn't anything that needed any type of anti B to clear it. i have never heard of a type of costo that required anti Bs to clear it,just take advil and wait for healing. interesting angle that needs to be ruled out along the way sammy.

MR,did they say anything in what you read about actually how they Dx that bacterial version at all? i just think it could be a possibility that needs ruling out. you just never really know what is actually going on inside the body til you start looking at everything and testing and ruling things out ya know? this is something sammy that you maybe need to pass along to the PM when you see him just to see what he may think? the symptoms do kind of fit there ya know? its just that 'something" is keeping this alive and feeding it or firing it? when in doubt,just rule it out kind of thing.

oh crap, i forgot i need to be somewhere this morning at 11:00 and i got up really late for some stupid reaon so i gotta fly for now. just haven't been able to sit at this PC for two days now and simply DO everything i wanted to do. i will fill you in on everything tomorrow hon. god i hate this. but just make that call on monday and tell them to send the release out to you. this is how i get all my records,i don;t even remeber the last time i actually filled out that release actually at any docs office. this is the easiest way sammy,trust me. til the morrow(hopefully) bye myfreaky friend,marcia
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 06-07-2008, 10:03 PM   #10
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Re: both shoulders/appointment soon

I didn't find any information on how they diagnose the bacterial costo. Just information on it being one type.

I'm healing up pretty well. My PT last week indicated I might be a bit behind on the bone healing because of some of the residual pain I am having. I guess that is a bit disappointing because I was 'ahead' of schedule in the beginning. I have regained almost normal movement in my arm. In fact, my shoulder is back to hyper-extending backwards. I have to be really careful there because even though my shoulder does it naturally, it is what caused my subluxation and impingement in the first place. I have some difficulty getting over waist high behind my back though. Still have pain with some movements, but it is getting better. My PT has me doing one exercise in particular that I still really hate. I put my arm straight out with my thumb turned down. I then have to raise and lower it 30 times. My hand shakes doing it and I am not even using any weights with this one. Evidently the exercise uses only one particular set of tendons that are also the same ones that were the most pinched off before the surgery. Also, some of the bicep focused exercises are still uncomfortable. Honestly though, it is so much better than before the surgery, that I don't have any complaints.

I have a follow-up with my surgeon this week and I expect he will release me. I also have my final PT session. I would like a couple more, but my insurance only approved 12 visits. At this point, I think it is just a matter of time (and exercise) to complete my healing. I still have a ways to go until I can meet my two original goals: easily fastening my bra behind my back and bowling.

 
Old 06-08-2008, 04:46 AM   #11
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Re: both shoulders/appointment soon

MR, wow those goals are really different. Bras & bowling. How funny two of the things I wish I could do. Wear a bra & bowl. My husband asked me acouple weeks ago about bowling which was pretty strange of him since I could not pick up the coffee pot. I would love to try one day. I think behind the back is & was tough for all of us. In the Am I cant take may arm back at all, get abit more movement at the day goes on but cant take it all the way back. Did you happen to read how they diagnosis the bacteril costo? My ribs are horrable some days. Take your time with that arm & be careful, I am sure they will release you with exercises. My hand would shake to depending on what they wanted me to do. I would like to see one of us come on here & say yes I made a full recovery! One painful surgery. My other shoulder hurts & the thought of going through that again scares me. When was your surgery again? I have to say trying to put your bra on from the back makes me cringe. Do you still have to ice at all? Just wondering.
Be careful Marica & I want to see you make a full succsessful recovery, right Marcia!


Maricia I will do that. Then they can have everything ready & I will go in & pick it up. I dare them to give me a hard time. My patience is gone with that office, I just know that the office staff screwed up some how. You ever get that feeling like you just know.
When it comes to the ribs I dont believe there are alot of dxs so of course I have been dxed with the costochondritis. My ribs are strange, some days you can see how they are just not right. For that matter my whole body is strange. I have so many symptoms I dont how to explain them all. You ever get like that. I do feel like a freak, I dont even know what words to use to describe half of how I feel. I could not make it through dinner yesturday, told my husbund get the check. I am breaking out into sweats & the nasuea is hitting me. I could not wait to get home & get on ice. Had to go wait in the car & do some deep breathing. This takes over your whole dang life. Could not eat hardly anything. I cant wait for PM, god I am praying it helps. I am going to put down some info for PM (notes or questions) I should be receiving a packet through the mail to fill out. correct me if I am wrong but at times on the PM board it sounds like it can difficult to change PM docs. I know I am jumping a head here but I do not intend to stay with anyone I am not happy with. After everything I have been through I just can't. I am hoping all goes well, but just in case. you know? I am becoming a worry wart over all of this. How is your pain level? I worry about you. As always you are in my prayers.

Nitro, go on the spinal board. I was just there an old friend popped on there asking for me. you can post your questions there, just start a thread with any questions you have about any surgery. Scroll down, even on some old pages & it will give you a general ideal on how to go about things. you may also ask on the PM board for example what meds, helps people with problems simulair to yours, & you can let them know about the liver issue to.
Look dont suffer alone, I know sometimes you feel like you have to. You have a whole board or soon to be friends & an actual cp friend near by. If you ever need to, call, I will try to do what I can for you. It is a lonely road. I will load you up & bring you over if you ever need to get away, you can bring your hot packs to & what ever else. My home is yours if you ever need it. Everyone makes theirselves at home here, everyone, that is the way we like it. I am here for you, at least I will try to be. I think the weather is making matters worse. Are you running your air? It is just to humid.
Look you marry for love, through good & bad. remember beauty comes from within. Soon as you can you need aday for you. Just for you. We will have to come up with something. You also need to see if the PM can give you some better pain control, I am sure he can. You will feel better if you have more control. you really need to ask. No sense in suffering, that is why you are in PM (pain management). I am here for you if you need me. I know girl it is tough & so dang depressing at times. Hang in there. you need help with the board let me know I can walk you through or what ever you need.
god bless, Sammy

Last edited by sammyo1; 06-08-2008 at 05:34 AM.

 
Old 06-08-2008, 08:50 AM   #12
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Re: both shoulders/appointment soon

hey MR? as long as you ARE actually making any real progress here,no matter how little or insignificant you may think it is,it IS progress and not going backwards ya know? you ARE gaining. and you just have to keep looking at that and not dwell on what you can't do yet. its the best way to look at our situations. i too am making progress,then its like i take a couple steps back,then forward agin. this i do think, is just the nature of what we are all dealing with ya know? the shoulder/cuff is just such a complicated area with sooo many different angles that that joint moves that every little change ,for me anyways,has brought on this kind of 'recycled" pain process as we have been working thru all the ROMS. but i am making real progress too,so there ya go. i just tried that thumbs down excercise and YES it does hurt! have not done that yet thru my PT.wow,who knew. i personally had to give up bowling a very long time ago,it was just too painful for my shoulder and my neck for some odd reason too. my initial shoulder crap began with some level of tear while in training to do my agility test for the FD back in 88-89? felt that "burn' but didn;t know what i did and it did get better with time,so i kept blowing it off to bursitis that i had been Dxed with many years before that. i do think that was the initial tear and life just made things worse along the way til that top tendon just tore right in half in nov of this past year,and i was done.
its just a long long road we are on now,but like i said,any progress we make IS going forward. one of MY goals is just to be able to actually get a freaking ponytail on the back top of my head again,if the rest of my hair doesn't fall out before then,lol. that has been going too.

sammy,have them just send your records in the mail and then you wont EVEN have to enter that office again ya know? it will only take two to three days max to send them once they get them copied. why even go there if you really don;t have to ya know?

what you were talking about with ALL the freaky crap you have going on right now or even before,can you just list symptoms or really off the wall stuff that you either have felt along the way or are dealing with right now? this IS exactly the way i feel too but alot of my rather off the wall crap is stemming from my SNS damage,and of course the other crappy things that got damaged in my cord too,but the more insane crap IS sns related. you just DO have something keeping this going in there or it wouldn't fire off like it has been. as they say,you have pain that is just way beyond what you would expect to have given the surgery post op crap ya know? this in and of itself kind of indicates possible SNS or neuropathic crap too,but my money is on the SNS connection.

that stuff you are going to be filling out when they send it from the pain clinic? let them know EVERYTHING that has been going on in there from pre op thru post op up til now. they just really do need eveerything that you have felt or been thru here in order to properly dx your process and all contributors there.

one thing that they actually sent me was just a simple body figure type thing where you kind of write and show where your pain is and what it feels like? be very specific with this diagram. if they don't send one to you,get online and just look up the dermatomes? they will show a basic figure with the 'dermatome man' on it? print it off and use that instead to give them the best ideas where everything actually is and what it is doing to you. believe me,when i first started at my PM i spent like just an hour doing this little dude and all my off the wall crazy crap. just draw a line out from the pain or symptoms spot to the outter edges of the papaer to give you more room to write, trying to do this just 'over" the spot of pain,well considering how much you have going on in that one spot there alone,it would get pretty messy,you know what i mean?the line thing works much better for those of us with mega symptoms in one area type thing. just some suggestions for ya. these papers are just that important to the eval hon. this new PM will need EVERY little pain and symptom you actually have going on. i am just VERY curious as to what he will think about the possible SNS damage somewhere up there.

also,if you have kept any type of pain journal or anything that has shown what symptoms you have had or have right now,would be good to bring to that eval/consult too. and make darn sure they know that you have been pretty much all along,UNDER medicating yourself out of fear of just not being able to get any more help from the surgeon so you don;t fully know just how well things 'would' have been if you had actually allowed yourself to just dose appropriately. like i said,the more info you can give them,the better. besides getting that eventual stellate to ID whats behind the firing of this nightmare,i am hoping they will at least try out oxycontin,the longer acting form of oxy on you. if that pain mess was actually responding to the oxy but you were undermedicating,you really have no idea just how well this could work for you in the long acting way either ya know what i mean?

when you are just starting with a new PM it is much easier to switch to another than if you were with a particular one for a longer period of time. if the current PM you have simply cannot offer the appropriate modalities that YOU need to really best manage your pain,what else can you do ya know? moving on to another would not be considered 'bad' or odd at all in the beginning. its just like getting that second opinion type thing as you would with any other type of doc that you see ya know? don't EVEN think that far ahead yet sammy,just concentrate right now on this upcomming PM appt and see how things go with that hon.

this may just be that perfect fit for you. my first one was the right place for me. never had reason to go anywhere else. i also was referred to this same PM i am seeing now about 11 years ago just strictly for TP injections for the TPs i kept getting under my right shoulder blade long ago. he really was a nice guy so when my primary was going to refer me back to him to take over,i really still didn;t know what to expect,but i remebered the "nice" pm anesthesiologist who did my injections,so it was okay. still nervous about that first visit,but okay with it too ya know? since you DID get a good recommendation about him,just go with the flow and see what happens. just lay it all out there,including what sets this whole thing off and how easiliy it occurs and gets to the point where you become sweaty and nauseas. they need to know sammys daily life here. the symptoms that you cannot put into words? does 'painsation' kind of fit? this is my new word that i created just to try and explain some of my more insane types of symptoms that i simply cannot describe to another human being unless they actually feel it? there is always a level of pain,along with some sort of insane sensation that combines with it? hence,painsation. just try as much as possible when explaining things either to the PM or in the papers you are going to fill out to compare what you actually are "feeling' to anything under the sun that comes as close to it as possible? you know what i mean? its like with my central pain syndrome? this actually feels just like a severe second degree burn that just never heals, it IS my skin now,not under it or on it,actually in it. does not "look' any different at all from my other skin,but man it sure does "feel' different. the RSD burning that is deep in my knee feels like a white hot intense burning? but only when it flares,otherwise it is just a churning burning deep nasty sting burn crap?these two areas just also happen to be the ones that don't respond to narcotics,except for the deep bone ache i have within that knee? that does respond to some degree,just not the burn. just try to compare your symptoms to ANYTHING at all you feel that someone could relate to. if you can't,you can't but in that case,the PM would know that what you are trying to describe is not coming from 'normal' pain generators and would look for underlying causes,so he would know that much anyways sammy. PM anesthesiologists are just VERY used to this with certain types of pain syndromes and know what to look for with certain generators. this is not like simply trying to talk/explain to a totally clueless primary,ya know? ya just have to see what he thinks about everything when he puts it all together for you hon.

i have not been able to get back to my PT guy here for about three weeks just due to a whole bunch of reasons. may was a very very bad month for me in alot of ways too. we finally interned my fathers ashes on the 16th with the full military honors he deserved. i was VERY close to my dad and he just up and died very suddenly out of the blue last year in march. i could not let go of him last year to get that part of things done so we finally did this last month. wow, i just got "something' from him just chillin in the livingroom still here but in a different way? didn;t expect that at all,it just helped me to deal with and fully process his death over this past year. but letting go of my 'rock" was very overwhelming for me. glad it is done tho and he is where he is supposed to be now. miss the hell outta him tho. he was just always there for me no matter what ya know? i am doing much better now than i thought i would tho,it just feels 'completed' now.

so now i am back among the living and doing a bit better in my head about all things. this whole past year has just sucked,for sooo many reasons. i am moving on. never expected yet one more surgery to have to be done either,just when i was actually making some progress with this PT guy back in sept thru nov til that tendon just went snappo on me. luckily i am already used to having many set backs and been there before or things would have just knocked me on my butt again like they did with the cavernoma dx and then the surgical decision from hell that came along with it. i got to 'choose' the lesser of two evils with that one. it kind of came down to just how much damage i wanted and how did i want it,and when. then all the unknowns(like the added bonus of the unexpected SNS damage?)that were going to just happen becasue of where they had to go. it was either that or wait for the very next bleed to close off that remaining cord space and become instantly irreversably paralyzed from the breasts on down,oh yippie. and they STILL would have had to go into my cord at that point to remove it. like i said,the lesser of two really sucky evils. worst choice i EVER had to make in my whole entire life there. okay,i am rambling now,somebody slap me.

lets just see how things go here sammy,K? just fill out that paper work as fully and completley as possible. the more solid info you can give them at the very beginning the better,more appropriate types of meds and treatments they will decide to at least try on you. its all a process of trial and error just like trying to treat or manage any other "medical" situation. they simply NEED ALL the facts here in order to do that for you. thanks for the prayers sweetie,and right back at you. marcia

 
Old 06-09-2008, 01:12 PM   #13
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Re: both shoulders/appointment soon

MR, Marcia is correct, my pt told me that there is not another joint that has as much movement as the shoulder, thus can be areally difficult & long recovery for some.

Marcia, I swear we have so much in common it is just strange. I am so sorry about your father. Truely & I feel your pain. I was so close to mine that when he passed I just did not know how I could go on. I felt so abandoned. Even though I had been married a couple years he was my anchor. the one person I could totally depend on & trust. I had a good mother, I just always was attatched to my father. To the point where everyone made a joke about it. I was the youngest of 10 & my dad was always there for me, my mom decided she wanted to take more time for herself so my dad did alot of raising me. I felt part of me left with him. Hard.

Girl you make me feel like such a whiner when you have so much going on.
That mind of yours really amazes me a times, "painsation", only you my friend would come up with that. I know I have the hardest time coming up with the words to describe how I feel at times. Every kind of pain since this has begun.

It has changed so much. Like why the heck would I have started out with those "hot spots" on my thigh & now nothing. I swear in the beginning I always felt is was effecting my leg at times, then it just started to change.
Yes the word Freak fits me. I really am almost afraid to say how it was, because it is so bizzare.
you know when I went to that naturalistic doctor he did what is called an Electro Interstitial scan (EIS), I 'll tell you that thing picked up on things that I had not even told anyone. The one thing that lingers in my mind it that doctor said "you have a problem in your lower back' know that is one thing that was never looked at. A few other things came out of that also that amazed me. In fact my husbunds coworker at work took his wife for one & same thing, was simply amazed at what came out of this test.
I wont go into it all right now but I am telling you, this guy was telling me areas that were bothering me that I had not said a word about. funny thing is the osteo pin pointed some of the same areas. Traditionsional doctors have never said a word. Here is the thing why would all the pain that went pretty much downward stop for the most part, & all the pain esculate in the area its in now. I still get pain in that hip but not as bad down the leg & those hot spots have stopped. To strange. Makes me wonder if I am having some issues with an area that has never been looked at, you know.
I dont really bring it up because had doctors look at me like I was loosing it. Yet thats the way it was, heck it would get so bad at times. I just have a feeling one of these days something is going to show in an MRI of that back. I have been told my more then one proffesional that those tests are not as dependable as people assume. Heck my sister when through one, she was in excruciating pain with RA, nothing much showed. By the time they repeated it like a year later part of her c spine was ready to collapse. Go figure.

I kept some notes some time ago. I am going to go through them to see how this really has evolved or changed. the one consistent thing is it has always been left sided. I am telling you if I went through it all you would probably say man she is a freak. What ever is or has went on has landed me where I am today & its getting worse. I cant believe at time how that shouler hurt & how it is going into the hands. My hands willl ache & hurt. Some morning I have no strength in them.
There is so much out there medically that I know nothing about. I will say that for the first time I have accepted the DX or myofascial damage. It just fits, you know with the ribcage & all. Of course I realize & for that matter think something else it probably going on to.
I'll tell you I can't help but still be fearful of having a docter look at me like I am out of my mind. I am assuming & hoping with PM they have seen alot of things. I really hope he may be able to find out if something else it happening in this messed up body of mine. Trust me like yours mine is a mess.
I'll tell you what I will go back & see what I have, I am really curious to see what you think. Keep in mind one of the biggest issues was with my breathing, from the get go. It is not anxiety trust me. Even had the doctors scratching thier heads, but with the muscle & rib stuff perhaps that was contributing. Really not one doctor took a his time looking at that area at all. Boy when I think back of going in & no exam really, especially in that area, I really have to hold my temper. I swear I was in once to twice a week, they would give me an injection of anti inflammatory & send me home. Unfortunantly for the surgeon he was the last straw, along with his office staff. He will be getting a letter eventually. I was told this PMs staff is really nice. Thank god. I honestly think the best. I am going to look up that list just to see of things I may have forgotten. Talk to you soon, let me know when your next appointment is with your PM. Sammy

 
Old 06-12-2008, 06:33 AM   #14
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Re: both shoulders/appointment soon

hey sammy. sorry its taken me a bit to get back to you. geez,too many things goin on here,again,ya know how that goes.believe me sammy,when you talk about ALL the different strange and insane types of symptoms you have going on,i KNOW exactly how you feel hon. this has been a non stop freak show marathon for me with things just there then gone or a new pain will suddenly turn into some crazy sensation,or i just feel things or actually just 'percieve" certain things at times? when something just happens,i have sooo many different things that simply "could" be the culprit without ever really knowing for certain just what or where it is actually generating from. welcome to "my" world,and sorry you are here. at least i don;t feel so alone now,lol. but i really do feel for ya hon. at times i just feel like some kind of assault victim,do you feel like that too? we get assaulted over and over by sudden off the wall freaky crap and indescribable pain that just puts my mind in that kind of spot sometimes. and with no predictability and no real control over it to make it stop,it just puts your mind in crappy places sometimes. the good thing is that i identified that part. i worked with sex assault and women who were beaten by their so called "loved ones" for three years for our countys sas and crisis intervention unit so i really felt what i had been hearing about for so many years. the very BEST thing that we can do for ourselves sammy is to try and maintain what we CAN control. it helps to counter that other out of our hands crap? just advocating for ourselves,gathering up all records and really just 'knowing' as much as we possibly can about different ways to manage our pain and conditions,and for you,just finding out what all your real contributors are at this point WILL help you alot hon,alot.

part of doing just that once you get in to see that PM will involve blocks,possibly more than one type(there are just many different types of diagnostic blocks out there that PMs use). it just helps to narrow down the bigger problem areas that are contributing up there right now. by simply using the stellate and selective nerve blocks at various times will really hopefully show just where and what is at least partially aiding this crap and keeping it going. something IS simply feeding this area in many ways and keeping it kind of always 'stimulated' you know what i mean?

i have to wait til i hear back from my neph about the dye used in the flouroscopy part of the symp block i need to just find out,for my kidneys sake,whether the amount of contrast they use to ID the right spot during the procedure will require me to have to take that nasty mucomyst i usually need with my angios? with kidney disease,the contrast can create worse kidney problems in people with an out of norm creatinine since it clears thru the kidneys and kind of hits them harder than in a normal person. my creatinines have always,so far as of when i had my surgery anyways,been within the norm range,but man,looking at my ultrasounds and seeing what they actually look like and being over four times their normal size,my neph usually requires it just as a protective measure. it tastes and smells like pure sulpher,its absolutely gross to have to chug down,but it does encapsulates the dye and safely eliminates it thru the kidneys without actually being filtered theu,so it is worth it for me to do it when the contrast is going to be enough to actually hit them. i just don;t know yet til i also speak with my PM as to how much dye they would use either with just a flouro guided procedure. i wouldn't think it would be all that much since it is just a tiny area,but i need to make certain. i didn;t have a freaking clue about the dye kidney connection and using the mucomyst til i ended up with that aneurysm and found out from my neuro rads nurse that there was actually something i could have taken when i did use the dang dye in MRIs and CTs? hellooo? my neph just told me to decline it when it was offered,so i just did that for a couple years. just when you think you actually "know' everything about your situation,something else new and exciting just happens to pop up. i am looking forward to getting that dang block tho,this knee is just too out of control like by 3-4 every day. it sucks not being able to actually use my TENS on it because it is now creating spasms in my leg cuz i have to ramp it up too high to meet the intensitiy of this new burning level. god i love life these days,don;t you?

have you gotten the release signed yet and sent it back? it really doesn;t take all that long once they get it. most surgeons have the copying places they hire for this come in like once a week at least. could be possibly more depending upon how busy that doc actually is and what his patients needs are too. i would LOVE to read thru those records with you sammy,i am sure they will be some interesting reading. i am just really wondering when and if he mentioned anything at all about your process there ever being what he felt at least somewhat SNS related at some point.

i am sooo hoping this new PM will be the right one for you and be able to get the ball rolling towards ruling things in or out as soon as possible. just getting the right stuff done and being on the right meds for you will help soo much sammy. there was a huge difference in what my pain was like when i walked into my PM for the first time and once we actually titrated up on my OC and got things better managed for me. big difference there. i am crossing the old fingers for ya here and anything else that will still cross for me,lol that this will be the guy who truely helps you. just make sure to fill out the paper work as completely as possible so he knows EVERYTHING both pre and post op.letting him also know about all your research into the muscles and the possible SNS stuff too will show him how much time you have spent on your own just trying to find the reasons for all this crap. it wouldn;t hurt either to obtain all your PT records as well as the osteo too. you need to see what their overall impressions are as well. this all really does help sammy in just taking control,and also feeling like you have some. hopefully you will be able to get some ideas about things on that same day you see the PM.

just keep me posted on all things sammy,K? i am hangin in there with ya too hon. marcia

 
Old 06-12-2008, 09:33 PM   #15
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Re: both shoulders/appointment soon

Well, you all....I lost power for several days.. and I still have no home phone..but what is worse is I dropped off a scrip at the phar and I went 3 days without nothing....I was going out of my body ......and thank GOD for prayer and for MEN how they deal with us WOMEN...in times like these are beyond me...I've only been only this board since last SAT and I had the opportunity to only post a couple and then my power and my basement flooded and .....enough detailis......I'm in agony~!!!!!!!!!!!!!!!!!!...I'm going for another block on June 25...and my birthday is June 17th....Happy Birthday to Pain.....I'm in a bad mood..I better leave......Good luck to you all.....

 
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