sammyo1
05-22-2008, 12:06 AM
I am in the boat I am in today because of misdiagnosis & the problem not being treating properly, according to the doctors who are treating me now.
So yes for the first time I took litature in & ask respectfully if this could be part of the problem, I explained that I felt I had to look into it on my own because I wanted to contibute any information I could about my symptoms, & lets face it 3 yrs & I am now a cp patient with not alot of hope for getting better. Well I took this info. to my pt & my osteo & both of them said indeed it could very well be a big part of what has been bothering me & that particulair area is often over looked. I think there is a time & place for a patient to take these measures. I definantly believe if you are getting no where with your doctors it is time to step up & be your own advocate. Do I think we should try to self diagnosis, of course not, but I do think there is nothing wrong with questions & research if it helps you better understand. I think it is all in the way you present it. I have dealt with many doctors because of my line of work & have seen things that have blown me away. In some ways I am ashamed that I was not more persistant in my own care.
I also can say first hand the the older generation are more fearful of questoning the doctors & put alot of faith in what they are told. I just dealt with that today also. I had an older gentlemen who would not speak up about his care, he did not want to question or upset the doctor, even though he knew the care he was receiving was inadequete.
Then again I read an article in the doctors office in a magazine telling people how to best prepare for a visit, in that article which I ask the receptionist to make a copy of it adviced you to indeed be you own advocate.
As far as the women thing goes, well I have seen news specials on the difference in care & even funding for research when it comes to men & womens health care. Man or women we all deserve the best care we can get.
My husband personally volunteers very little info. to the doctors, I do go to any important appointments with him or he tends to have selective memory. Just thought that thread was so ironic giving the fact this is the first time I have ever printed & gathered my own research to take with me to the doctors. Yes I have some what changed when dealing with doctors, but I am sure anyone in my shoes would be the same, but to each their own. Respectfully, Sammy
So yes for the first time I took litature in & ask respectfully if this could be part of the problem, I explained that I felt I had to look into it on my own because I wanted to contibute any information I could about my symptoms, & lets face it 3 yrs & I am now a cp patient with not alot of hope for getting better. Well I took this info. to my pt & my osteo & both of them said indeed it could very well be a big part of what has been bothering me & that particulair area is often over looked. I think there is a time & place for a patient to take these measures. I definantly believe if you are getting no where with your doctors it is time to step up & be your own advocate. Do I think we should try to self diagnosis, of course not, but I do think there is nothing wrong with questions & research if it helps you better understand. I think it is all in the way you present it. I have dealt with many doctors because of my line of work & have seen things that have blown me away. In some ways I am ashamed that I was not more persistant in my own care.
I also can say first hand the the older generation are more fearful of questoning the doctors & put alot of faith in what they are told. I just dealt with that today also. I had an older gentlemen who would not speak up about his care, he did not want to question or upset the doctor, even though he knew the care he was receiving was inadequete.
Then again I read an article in the doctors office in a magazine telling people how to best prepare for a visit, in that article which I ask the receptionist to make a copy of it adviced you to indeed be you own advocate.
As far as the women thing goes, well I have seen news specials on the difference in care & even funding for research when it comes to men & womens health care. Man or women we all deserve the best care we can get.
My husband personally volunteers very little info. to the doctors, I do go to any important appointments with him or he tends to have selective memory. Just thought that thread was so ironic giving the fact this is the first time I have ever printed & gathered my own research to take with me to the doctors. Yes I have some what changed when dealing with doctors, but I am sure anyone in my shoes would be the same, but to each their own. Respectfully, Sammy
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aussiejono
05-22-2008, 01:09 AM
One thing I learend - being stoic, the stiff upper lip, dont complain, downplay your pain attitude doesnt get you anywhere.
Its pretty obvious, if you dont tehh the doctor how bad it is, s/he isnt likely going to offer you the relief you need, but for years, I would do that, and walk out with a scrit for Naprosyn, or be told to ask the paramacist for some OTC headache pills...
Its pretty obvious, if you dont tehh the doctor how bad it is, s/he isnt likely going to offer you the relief you need, but for years, I would do that, and walk out with a scrit for Naprosyn, or be told to ask the paramacist for some OTC headache pills...
forginon
05-22-2008, 11:36 AM
I agree 100% about being your own advocate.
And these things take time. Sometimes you have to spend time setting the stage. I learned this from my therapist who was so helpful to me when I had been detoxed off of the fentanyl and needed to get something new. I had given up, having learned that I was gonna get screwed no matter what I did. I was in a really bad place. She taught me how to start slow, show compliance to treatments that haven't worked in the past but are needed so the doc can show a ladder of escalation from the NSAIDS, ultimately to opioids, etc. Drop hints along the way so when you bring the subjects up again later it won't come as a surprise to the doc. Learn how the doc works, what his/her preferences are, what it takes to get him to consider ideas outside of the box - all these things. This can take months of preparation but the payoff is worth it.
I would not enjoy having to start all over again with a new doc, but I think I understand what to do. And the most critical element is being your own advocate. Others can support you, but there always comes a time to stand up and be heard. Oftentimes this is when respect is earned, if one's approach is measured and reasonable.
The one final item in my toolbox for self-advocacy is to speak the doc's language. Doctors are scientists first and foremost. They speak in objective terms, and work best when results and goals are measurable. This is why I so often recommend that folks keep a pain diary and record their pain scores regularly. Even though the selection of a score is subjective, the fact that numbers are used to represent subjective measures is right up the doc's alley. Setting goals using numbers, like having an average daily pain score of 5 once again communicates objective measures. Besides numbers, goals stated in terms of functionality also work. Most PM docs want to see their pharmaceutical therapy to result in increased functionality. Few are willing to dole out narcotics if the end result is producing or maintaining a couch potato. If one proposes treatment in order to achieve a certain pain level and to once again be able to do certain things like walk, take vacation, return to involvement with family - docs are much more inclined to agree with scripts for opioids.
This is how I see self-advocacy. It has worked very well for me.
steve
And these things take time. Sometimes you have to spend time setting the stage. I learned this from my therapist who was so helpful to me when I had been detoxed off of the fentanyl and needed to get something new. I had given up, having learned that I was gonna get screwed no matter what I did. I was in a really bad place. She taught me how to start slow, show compliance to treatments that haven't worked in the past but are needed so the doc can show a ladder of escalation from the NSAIDS, ultimately to opioids, etc. Drop hints along the way so when you bring the subjects up again later it won't come as a surprise to the doc. Learn how the doc works, what his/her preferences are, what it takes to get him to consider ideas outside of the box - all these things. This can take months of preparation but the payoff is worth it.
I would not enjoy having to start all over again with a new doc, but I think I understand what to do. And the most critical element is being your own advocate. Others can support you, but there always comes a time to stand up and be heard. Oftentimes this is when respect is earned, if one's approach is measured and reasonable.
The one final item in my toolbox for self-advocacy is to speak the doc's language. Doctors are scientists first and foremost. They speak in objective terms, and work best when results and goals are measurable. This is why I so often recommend that folks keep a pain diary and record their pain scores regularly. Even though the selection of a score is subjective, the fact that numbers are used to represent subjective measures is right up the doc's alley. Setting goals using numbers, like having an average daily pain score of 5 once again communicates objective measures. Besides numbers, goals stated in terms of functionality also work. Most PM docs want to see their pharmaceutical therapy to result in increased functionality. Few are willing to dole out narcotics if the end result is producing or maintaining a couch potato. If one proposes treatment in order to achieve a certain pain level and to once again be able to do certain things like walk, take vacation, return to involvement with family - docs are much more inclined to agree with scripts for opioids.
This is how I see self-advocacy. It has worked very well for me.
steve
HBMod07
05-22-2008, 02:43 PM
The original thread was closed not because of the topic but in the manner it which it was responded to. Please keep all posts within the guidelines of the forum. Personal, ethical, racial, sexist etc remarks are not tolerated and will result in a permanent ban.
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sammyo1
05-23-2008, 12:32 PM
Hopefully we are complying here, I sure do not mean offense in anyway.
Steve & company, I think it is so important to listen & perhaps take into consideration what others have experianced. Learn from others & maybe it will help you out in the long run. I think we all dread starting with a new doctor. I always try to keep an open mind but always are abit apprehensive. A PM is abit different I think. That doctor will ultimantly have a hand in how you will live your everyday life with respect to pain levels & we all know by being members, a good one can be hard to find. I am keeping my fingers crossed & going to ask a couple of my doctors & express my fears. They can't read my mind so I might as well speak up. I so appreciate any advice or experiances shared, it is up to me to take what I learn & use it as I see fit. Thank god I have the tip of the iceberg understanding with medical termanology. I will get to know a doctor before I ever go in with any info. I gather through my own reserch, some are open minded some are not.
I want the people to understand here that this is a part of my life I don't share to often with others, so what ever is said I take as an opinion & respect everyones point of view. I am lucky to have found these boards & feel privledged to meet you all. Sammy
Steve & company, I think it is so important to listen & perhaps take into consideration what others have experianced. Learn from others & maybe it will help you out in the long run. I think we all dread starting with a new doctor. I always try to keep an open mind but always are abit apprehensive. A PM is abit different I think. That doctor will ultimantly have a hand in how you will live your everyday life with respect to pain levels & we all know by being members, a good one can be hard to find. I am keeping my fingers crossed & going to ask a couple of my doctors & express my fears. They can't read my mind so I might as well speak up. I so appreciate any advice or experiances shared, it is up to me to take what I learn & use it as I see fit. Thank god I have the tip of the iceberg understanding with medical termanology. I will get to know a doctor before I ever go in with any info. I gather through my own reserch, some are open minded some are not.
I want the people to understand here that this is a part of my life I don't share to often with others, so what ever is said I take as an opinion & respect everyones point of view. I am lucky to have found these boards & feel privledged to meet you all. Sammy
cmpgirl
05-23-2008, 01:15 PM
Sammy, It's good to hear you feeling so empowered. I know it's still scary, but I commend you for arming yourself with as much knowledge as you can. Only we know our own bodies and you are so right, these docs are not mind readers.
You don't have to share everything at once with a new doc. In my experience, their first concern is what your pain levels and quality of life are right now, and what you hope to gain from pain management. As long as you are not asking them for a miracle (We'll leave that to the Man Upstairs), a good PM should be willing to help you achieve your goal.
You know I am here for you, for whatever I can do. So, please don't hesitate to ask. Stay strong and determined and you will be just fine. God Bless, CMP/MM
You don't have to share everything at once with a new doc. In my experience, their first concern is what your pain levels and quality of life are right now, and what you hope to gain from pain management. As long as you are not asking them for a miracle (We'll leave that to the Man Upstairs), a good PM should be willing to help you achieve your goal.
You know I am here for you, for whatever I can do. So, please don't hesitate to ask. Stay strong and determined and you will be just fine. God Bless, CMP/MM
sammyo1
05-24-2008, 11:16 AM
cmp, I have to admitt I am scared as heck, but look what happened when I put everything into these doctors hands for 3 yrs. I will get to know & get the feel for a doctor before I do anything. I am going to make calls this week & see if I can get the ball rolling for pm. Why wait? This is getting worse, it is waking me up every morning & I am tired of trying to hold back on the meds out of fear of not getting a refill. So it is time to lay it on the line with the surgeon. I have done every single thing I was told by every doctor. I am not asking for stronger meds but perhaps there is something the surgeon can do to help why I am waiting to get into a pm, you know a different muscle relaxer that will work while not making me feel like I have left the planet, something.
If I may ask what is your worst time of the day? I will tell your mornings are tough for me. I used to have pain control by evening but not any more. I just never know how the day is going to go. I am really anxiious now to get some good pm so I can some what go on with my life. I told my husband this morning I just dont remember what it's like to not have pain for a day. The impact of my family is huge as you well know. I am holding back not only my life but theirs. could not follow through with plans for the weekend, to darn afraid to be a distance from home for any length of time right now. Even a 2hr drive sounds scary to me. I just don't want to have them sacrafice for me. I am still dealing with the fact I could not be at my sister in laws funeral & I know if not for this I would have been there. This is tough, its a emotional rollercoster. Everyday I tell myself one day at a time, don't think to far ahead. Does any of this sound familier? I am having a hard time breathing today so there goes my day. Do you get use to this? If it is something doctors are not knowledgable about now I can't imagine what you went through years ago. Once again thank you, I imagine I will be saying that alot. Sammy
If I may ask what is your worst time of the day? I will tell your mornings are tough for me. I used to have pain control by evening but not any more. I just never know how the day is going to go. I am really anxiious now to get some good pm so I can some what go on with my life. I told my husband this morning I just dont remember what it's like to not have pain for a day. The impact of my family is huge as you well know. I am holding back not only my life but theirs. could not follow through with plans for the weekend, to darn afraid to be a distance from home for any length of time right now. Even a 2hr drive sounds scary to me. I just don't want to have them sacrafice for me. I am still dealing with the fact I could not be at my sister in laws funeral & I know if not for this I would have been there. This is tough, its a emotional rollercoster. Everyday I tell myself one day at a time, don't think to far ahead. Does any of this sound familier? I am having a hard time breathing today so there goes my day. Do you get use to this? If it is something doctors are not knowledgable about now I can't imagine what you went through years ago. Once again thank you, I imagine I will be saying that alot. Sammy
cmpgirl
05-24-2008, 01:26 PM
Hey Sammy, Mornings can be awful. They are a little better over the last couple of years, since my doc upped my Oxycontin to 3x/day. Having that last dose before bed, is so much better. That being said, it is still not a pleasant time. There is no such thing as getting up, jumping in the shower and going about my day. I have had to totally change the way I schedule things. I plan very little before noon. It's a real catch 22. If I don't sleep well, I suffer from that. If I take something really strong, and sleep like a rock, I am so sore and stiff in the a.m. that I can't move. You have to try and find a balance. And I'm still not totally successful with that.
Yes, you do get "used" to it, in a way. Not that you ever come to a point where you forget about the pain, but you do learn a whole new way of functioning. It has been a real case of trial and error, to find out how to do things. I am at a point now, where I can plan more ahead of time, for trips or long days of having people over for dinner, etc. There have only been a couple of times over the past 5 years or so, where I have had to cancel plans, due to a pain spike. You definitely learn how to be more creative about doing things and there are still things that I just can't do and know I won't be able to again. That comes with the whole acceptance aspect, and is a process. I've learned the hard way.
You are doing the best thing, pursuing PM. Try and be open to everything that is offered, but also, don't be afraid to let the doc know if it is doing you more harm than good. I wish you the best, in finding the right PM doc. It is what makes all the difference. Take care and keep me posted, OK?
Hugs, CMP/MM
Yes, you do get "used" to it, in a way. Not that you ever come to a point where you forget about the pain, but you do learn a whole new way of functioning. It has been a real case of trial and error, to find out how to do things. I am at a point now, where I can plan more ahead of time, for trips or long days of having people over for dinner, etc. There have only been a couple of times over the past 5 years or so, where I have had to cancel plans, due to a pain spike. You definitely learn how to be more creative about doing things and there are still things that I just can't do and know I won't be able to again. That comes with the whole acceptance aspect, and is a process. I've learned the hard way.
You are doing the best thing, pursuing PM. Try and be open to everything that is offered, but also, don't be afraid to let the doc know if it is doing you more harm than good. I wish you the best, in finding the right PM doc. It is what makes all the difference. Take care and keep me posted, OK?
Hugs, CMP/MM
forginon
05-24-2008, 01:28 PM
Hopefully we are complying here, I sure do not mean offense in anyway.
Steve & company, I think it is so important to listen & perhaps take into consideration what others have experianced. Learn from others & maybe it will help you out in the long run...
Sammy,
Come again?
Not sure I understand.
steve
Steve & company, I think it is so important to listen & perhaps take into consideration what others have experianced. Learn from others & maybe it will help you out in the long run...
Sammy,
Come again?
Not sure I understand.
steve
sammyo1
05-25-2008, 09:10 AM
Steve, I am referring to dealing with doctors.
Some like me are still in the process of finding a good pm, which I think we all know by now how important a good pm will be for our futures. So I for one, try to listen & be open minded when advice is given or someone shares their experiances here.
As far as my opening statement, well I guess given my family we all like to debate at times (except my husband, poor guy). I even wonder if I encouraged my own daughters to speak their minds abit to much so if I give my opinion it is just that, my opinion. I would hope it is never perceived as being offensive to anyone on the boards or offensive to the moderaters.
cmp, I am the same. I can't jump out of bed & just go. No way. I even set up my coffee the night before now. Never use to do that.
I want to be able to do things like vacations or even going for all day outings, but that is not going to happen until I get into a PM. If the pain gets out of control then I know it takes abit to calm it down & I do not want to be away from home. If this happens then my breathing is aggravated & I am to fearful of going any distance. I hate that fear. The mind is a powerful thing. When this all started I was transported by EMS from a locaton (a big indoor/outdoor vegtable market) between my own home & my girls godparents, its like 40 minutes between the two homes. Well I pass that all the time when we are going out there & it still triggers something like anxiety in me. Strange. The location is bit in the country & it took forever to reach the hospital. The paramedics thought I was having a heart attack, as did I. My friend had ask before they left with me if they thought it was anxiety & they said no, they were waiting for another unit with paddles just incase, which I did not know at the time, thank god. My friend told me after. I don't know if I will ever get over that fear of being way out there in the country knowing that I am a distance from any hospitals. It was a nightmare. I just could not breathe & my blood pressure was low to begin with so the nitro they were giving me was on the verge of bottoming it out.
Since then I have such a fear of being to far from home or help, I feel so guilty because it is costing my family. I cant wait to get into a good pm, hoping it will allow me to live more of my life. Thank you so much, Sammy
Some like me are still in the process of finding a good pm, which I think we all know by now how important a good pm will be for our futures. So I for one, try to listen & be open minded when advice is given or someone shares their experiances here.
As far as my opening statement, well I guess given my family we all like to debate at times (except my husband, poor guy). I even wonder if I encouraged my own daughters to speak their minds abit to much so if I give my opinion it is just that, my opinion. I would hope it is never perceived as being offensive to anyone on the boards or offensive to the moderaters.
cmp, I am the same. I can't jump out of bed & just go. No way. I even set up my coffee the night before now. Never use to do that.
I want to be able to do things like vacations or even going for all day outings, but that is not going to happen until I get into a PM. If the pain gets out of control then I know it takes abit to calm it down & I do not want to be away from home. If this happens then my breathing is aggravated & I am to fearful of going any distance. I hate that fear. The mind is a powerful thing. When this all started I was transported by EMS from a locaton (a big indoor/outdoor vegtable market) between my own home & my girls godparents, its like 40 minutes between the two homes. Well I pass that all the time when we are going out there & it still triggers something like anxiety in me. Strange. The location is bit in the country & it took forever to reach the hospital. The paramedics thought I was having a heart attack, as did I. My friend had ask before they left with me if they thought it was anxiety & they said no, they were waiting for another unit with paddles just incase, which I did not know at the time, thank god. My friend told me after. I don't know if I will ever get over that fear of being way out there in the country knowing that I am a distance from any hospitals. It was a nightmare. I just could not breathe & my blood pressure was low to begin with so the nitro they were giving me was on the verge of bottoming it out.
Since then I have such a fear of being to far from home or help, I feel so guilty because it is costing my family. I cant wait to get into a good pm, hoping it will allow me to live more of my life. Thank you so much, Sammy
feelbad
05-26-2008, 11:21 AM
the thing with your situation sammy is very very basic. no one EVER bothered to just 'track this back" to the source for you,ya know what i mean? i know when we chatted about a month ago and i mentioned just looking at what actually attaches the ribcage to the area would be a good try to just see what may be affecting those ribs. but it wasn't til i was just looking up,for me,just what the possible underlying issue could be with everything attached to that roator cuff that i saw that serratus and this little light bulb went off in my head and immediately thought of your rib thing that i connected the little dots there ya know?
whatever our real symptoms are with any condition,espescially spinal,just simply looking into where the 'base of operations' are can give you alot to go on. when my spinal cord crap was showing all kinds of just insane over the top types of symptoms,mostly during that first year. thats when i started to look at what i was feeling and found out about the spinal tracts and was able to match my symptoms almost dead on for the level of tract damage and what each one governs(i had found a site that showed the different spinal tracts that had them layed out like a slice pic on my MRI then just matched where my cavernoma had been with the areas of tracts that were there). that explained alot. i would then ask my NS about this and he,in most cases,confirmed it for me. one thing i found out when dealing with alot of the more in depth spinal stuff and SCI in general? most NSs wont actually 'suggest' or even mention certain things to a patient mostly becasue that 'power of suggestion' thing? there IS a definite connection between a doc suggesting something then a patient suddenly 'feeling' it. its kind of the same principal when people have very vaugue type of symptoms and start looking things up on the net and thinking they have a brain tumor or are going to die or something?
but in your particular situation,all it would have taken is for any one of your medical or PT people to just do what i did,track back what governs the raising and lowering of the ribcage itself,ya know? pretty basic stuff there. any one of them could have taken the time to just do that much for you. just that simple tracking back can really explain so much about a persons symptoms or what they are actually feeling in any given area,and mostly where it is coming from.
just as an example, looking at what fingers feel tingles or pain or numbness,just tracking the fingers back to the spinal nerve that governs it just would narrow down that area of involvement,from there,an EMG would tell more specifically where that interupption is,or if that problem actually IS in the nerve roots that govern that area. i mean this is not rocket science or something. just the basics. at this point i think i want as much as you do just to really find out what IS affecting you the most and what the underlying contributors to all you are feeling actually is stemming from. geez,its been a heck of a long road for you hon,with very little real solid info for you too.
sometimes when you are not getting your own real needs met by your docs or any solid answers as to why,you just DO have to be your own advocate and force someone to just listen to what YOU have found out on your own and standing up to them and at least get it checked into so it can be either ruled out or in as at least part of your medical problem anyway. that muscle just 'fits" so well with what your ribs are doing hon,sooo much. someone should have looked into it before you had to bring it to their attention,thats all. it doesn;t matter how obscure or rare that involvement may have been,what matters here is THAT area is where that base is, and what it actually does with the ribs. something is just 'not right' there that needs to be looked into and followed up on. you just shouldn;t have had to bring it up,they should have already 'known' to at least check where it begins or just 'works" from
hopefuly you are onto something with this. just getting that referral to that PM will really help sooo much with all you have going on and allow some possible diagnosing of all the different possible contributors you may have with this whole recycled process you have been forced to have to deal with. just have that chat with your surgeon and DO ask about all things that could be contributing. i am thinking he already feels that some of this anyways is being sympathetically generated or involved at least to a certain degree. getting those "impressions' in his records on you really really should be done before you actually see him about the referral and everything else you need to actually discuss with him hon. there IS info there that you really just need to know. i am hanging in there with ya sammy. just do what you have to do to get all those real needs met at this point. it has just gone on long enough without any solid dx or real good info on your whole "process'.marcia
whatever our real symptoms are with any condition,espescially spinal,just simply looking into where the 'base of operations' are can give you alot to go on. when my spinal cord crap was showing all kinds of just insane over the top types of symptoms,mostly during that first year. thats when i started to look at what i was feeling and found out about the spinal tracts and was able to match my symptoms almost dead on for the level of tract damage and what each one governs(i had found a site that showed the different spinal tracts that had them layed out like a slice pic on my MRI then just matched where my cavernoma had been with the areas of tracts that were there). that explained alot. i would then ask my NS about this and he,in most cases,confirmed it for me. one thing i found out when dealing with alot of the more in depth spinal stuff and SCI in general? most NSs wont actually 'suggest' or even mention certain things to a patient mostly becasue that 'power of suggestion' thing? there IS a definite connection between a doc suggesting something then a patient suddenly 'feeling' it. its kind of the same principal when people have very vaugue type of symptoms and start looking things up on the net and thinking they have a brain tumor or are going to die or something?
but in your particular situation,all it would have taken is for any one of your medical or PT people to just do what i did,track back what governs the raising and lowering of the ribcage itself,ya know? pretty basic stuff there. any one of them could have taken the time to just do that much for you. just that simple tracking back can really explain so much about a persons symptoms or what they are actually feeling in any given area,and mostly where it is coming from.
just as an example, looking at what fingers feel tingles or pain or numbness,just tracking the fingers back to the spinal nerve that governs it just would narrow down that area of involvement,from there,an EMG would tell more specifically where that interupption is,or if that problem actually IS in the nerve roots that govern that area. i mean this is not rocket science or something. just the basics. at this point i think i want as much as you do just to really find out what IS affecting you the most and what the underlying contributors to all you are feeling actually is stemming from. geez,its been a heck of a long road for you hon,with very little real solid info for you too.
sometimes when you are not getting your own real needs met by your docs or any solid answers as to why,you just DO have to be your own advocate and force someone to just listen to what YOU have found out on your own and standing up to them and at least get it checked into so it can be either ruled out or in as at least part of your medical problem anyway. that muscle just 'fits" so well with what your ribs are doing hon,sooo much. someone should have looked into it before you had to bring it to their attention,thats all. it doesn;t matter how obscure or rare that involvement may have been,what matters here is THAT area is where that base is, and what it actually does with the ribs. something is just 'not right' there that needs to be looked into and followed up on. you just shouldn;t have had to bring it up,they should have already 'known' to at least check where it begins or just 'works" from
hopefuly you are onto something with this. just getting that referral to that PM will really help sooo much with all you have going on and allow some possible diagnosing of all the different possible contributors you may have with this whole recycled process you have been forced to have to deal with. just have that chat with your surgeon and DO ask about all things that could be contributing. i am thinking he already feels that some of this anyways is being sympathetically generated or involved at least to a certain degree. getting those "impressions' in his records on you really really should be done before you actually see him about the referral and everything else you need to actually discuss with him hon. there IS info there that you really just need to know. i am hanging in there with ya sammy. just do what you have to do to get all those real needs met at this point. it has just gone on long enough without any solid dx or real good info on your whole "process'.marcia
sammyo1
05-28-2008, 08:42 AM
Thanks ladies, as I mentioned in my other thread the osteo doc whom I was seeing recommended three pm names to me & said to see who the surgeon recommends. She will how ever help me get in to a pm if I have any problems & agrees I should definantly be seeing one. Praise the lord, finally. Of course she said the one in particulair is really a nice guy who seems very compassionate & of course he is the one who is a distance from my house. Driving is one of those things that aggravate the crap out of me when I am flared up. Which lately is most of the time. I came right out & asked her if she thought I should be in PM & she said absolutly, & that I would need it before any further therapy could be done. Simply reverse the process, pm first then therapy to gain ROM.
Of course one doctor will not butt heads with another & I have to wait to see who the surgeon recommends. At least I know someone is willing to help me get in if I need it. I have taken the advice & asked for a rehab or anasthes. , two have web sites & one is an anasth. the other I will have to call or ask the surgeon about. I could have cried with relief when she said she would help me get in if need be. I want to make a good choice after learning from this board. I am finally feeling some relief knowing perhaps a PM can give me some quality in my life again. My youngest daughter is even excited for me when I told her I will be getting into pm, maybe, just maybe I can go on a vactaion. I would love to play ball again with my kids but I will settle for what ever I can get.
The thing is when the Osteo called I did not hold back & I told her how I felt. The anxiety & stress involved, & how worried I was about my future. I came right out & asked her opinion on what was bothering me. I told her I was worried about it taking along time to get into a PM, you know sometimes you have to wait months to get in, & she said no you don't, that the surgeon should help there & if he don't she will. So we will see what the surgeon says. Sammy
Of course one doctor will not butt heads with another & I have to wait to see who the surgeon recommends. At least I know someone is willing to help me get in if I need it. I have taken the advice & asked for a rehab or anasthes. , two have web sites & one is an anasth. the other I will have to call or ask the surgeon about. I could have cried with relief when she said she would help me get in if need be. I want to make a good choice after learning from this board. I am finally feeling some relief knowing perhaps a PM can give me some quality in my life again. My youngest daughter is even excited for me when I told her I will be getting into pm, maybe, just maybe I can go on a vactaion. I would love to play ball again with my kids but I will settle for what ever I can get.
The thing is when the Osteo called I did not hold back & I told her how I felt. The anxiety & stress involved, & how worried I was about my future. I came right out & asked her opinion on what was bothering me. I told her I was worried about it taking along time to get into a PM, you know sometimes you have to wait months to get in, & she said no you don't, that the surgeon should help there & if he don't she will. So we will see what the surgeon says. Sammy
cmpgirl
05-28-2008, 10:30 AM
Of course one doctor will not butt heads with another & I have to wait to see who the surgeon recommends. At least I know someone is willing to help me get in if I need it. I have taken the advice & asked for a rehab or anasthes. , two have web sites & one is an anasth. the other I will have to call or ask the surgeon about.
Sammy, I wouldn't worry about who the surgeon recommends or not. I know he has been the one coordinating your PM up to this point, but he has done his part now, and you have been told you are chronic, so I don't think it should matter to him which one of the PM docs you choose.
Your best bet seems to be the one the osteo has recommended. I am sure she has a better idea of who is more competant and compassionate, since she more than likely sees a lot of patients who are already in PM. I know the one farther away is more difficult to get to, but in my case, my doc is an hour away and I would drive farther if I had to. It's because he is so good, and worth every trip.
I really wouldn't be so concerned about the surgeon's opinion, because you probably won't be seeing him much, if at all, after you have found a PM, unless you require more surgery (God forbid!)
Hang in there my friend. I know this is going to work out for you. As always, you are in my thoughts and prayers. Hugs, CMP/MM
Sammy, I wouldn't worry about who the surgeon recommends or not. I know he has been the one coordinating your PM up to this point, but he has done his part now, and you have been told you are chronic, so I don't think it should matter to him which one of the PM docs you choose.
Your best bet seems to be the one the osteo has recommended. I am sure she has a better idea of who is more competant and compassionate, since she more than likely sees a lot of patients who are already in PM. I know the one farther away is more difficult to get to, but in my case, my doc is an hour away and I would drive farther if I had to. It's because he is so good, and worth every trip.
I really wouldn't be so concerned about the surgeon's opinion, because you probably won't be seeing him much, if at all, after you have found a PM, unless you require more surgery (God forbid!)
Hang in there my friend. I know this is going to work out for you. As always, you are in my thoughts and prayers. Hugs, CMP/MM
sammyo1
05-28-2008, 01:12 PM
cmp, actually the osteo was hoping that the surgeon will know PM doc more suitable for me because she does not recommend alot of people to PM, but in my case she is willing to help if need be. We are both hoping one of his recommendations match hers. Also I have to wait for his final decision to put me into PM, according to the osteos wishes & see if he will help me avoid a long wait to get in. If there is a problem after speaking to him I can then ask for her help so I am not stuck waiting for ever to get in.
The last time I had to get into a rehab. doc took me two months almost with no help from the referring doctor. At this point thus far the osteo said that should not be the case with me because there is to much going on. Put up a thread , out of pain meds as of today & I am leaving a message with the surgeons assistant when they call back to see if I can get a recommendation for pm sooner. I have to save the last percocet for morning or I wont be able to move. Both my shoulders are in so much pain, its all crazy. If the pain is let go I wont be able to breathe without a struggle. Of all days my muscles are in such spasm Its terrable. Live & learn, I wont let the pharmacy short me again, even the two pills would have gotten me through till tommorrow. This is a crummy way to live. I can see why cp patients get depressed & I am fighting like crazy not to be in that boat. I will be on ice all day. Wish me luck. I have some questions for you but in to much pain to even think straight. So I will ask later. Sammy
The last time I had to get into a rehab. doc took me two months almost with no help from the referring doctor. At this point thus far the osteo said that should not be the case with me because there is to much going on. Put up a thread , out of pain meds as of today & I am leaving a message with the surgeons assistant when they call back to see if I can get a recommendation for pm sooner. I have to save the last percocet for morning or I wont be able to move. Both my shoulders are in so much pain, its all crazy. If the pain is let go I wont be able to breathe without a struggle. Of all days my muscles are in such spasm Its terrable. Live & learn, I wont let the pharmacy short me again, even the two pills would have gotten me through till tommorrow. This is a crummy way to live. I can see why cp patients get depressed & I am fighting like crazy not to be in that boat. I will be on ice all day. Wish me luck. I have some questions for you but in to much pain to even think straight. So I will ask later. Sammy