Hello all, I noticed the last two scipts I picked up from the surgeon are wrote for less. I am assuming this is his way of letting me know he is attemping to cut back. I can take as I need for three months, which would be the end of april, beginning of may. I am still in alot of pain, after starting PT, I understand some of the reason why, with the ribs being hypermoble & overdoing at going back to work.
Of course I am worried. I have tried everything to cut back on my own, topical rubs, otc's, & still looking, but thus far nothing. Some days I can manage on abit less but not much.
Gosh between the two shoulders & the ribs if he really cuts me back I am in big trouble all the way around. No way can I keep my job, well anyone in this state hangs on to their job for dear life. No way could I even function well. My breathing can be so hindered at times from the ribs, if I had nothing to take I could not make it.
I fear I am in trouble with the ribs.
I called for a script to be faxed to the med. supply for the binder for the ribs, got two phone calls from different people telling me they do not trreat ribs & he would probalby not give the script.
Well I had to explain over & over that so far the pts, surgeon & other docs, believe the ribs are due to the shoulder being let go for so long, so they are thought to be related. The surgon did fax over the script, but it made me realize that in all probability he will not continue to help me with the ribs, if the shoudler heals faster then the ribs. I also have the other shoulder that acts up, I am now concerned.
If it does not improve soon the pt is letting the surgeon know that I need additonal testing. I will probably have to look for someone to treat this now. I am so tired of it all. My primary wont deal with it because they consider me to be a CP patient. I already went from 1month of pt to an estimated 8 to 10 weeks, think that will tell the surgeon something?
I wish they could hook me up to something to that would tell them how painful this can be, I wish that existed for all of us, then perhaps the doctors would get it. I know if I have to start over I will fall apart. Perhaps that would be the time to move to a PM doctor, what do you think?
Just thought I would see what you all thought of this. Sammy
Sammy- Yes, it appears that it is time to start seeing a PM Doc. Your Surgeon is probably trying to tell you something via the meds....He needs to come out and say something, however. How much did he cut you back?
You'll have to mention it your next appt, or make one to ask him his recommendation going forward....Tell him you noticed he wrote for less meds, but you're still in a lot of pain. Tell him what you wrote here....That you wish a machine existed that they could hook you up to to see how much pain you're in. You need to ask him what he foresees in terms of LT care / PM.
In all reality, any surgeon operates and then cares for his patients post-op for some reasonable time frame. He probably doesn't want to get into a long term care situation....I know that may not feel right, but I'm just telling you his probable mind set.
You will need to talk to him about a referral to a good pain mgt Doc...Make sure he understands how much pain you're in and hopefully, he'll be diligent and prudent in his referral. It also sounds as if you might need to pursue disability at some point...Either through your job, SS, or both. Sorry you're going through this....I know it's gotta be tough...Hang in there.
I agree with Executer! I think you have needed the PM for aa while now so I hope that the referral will happen soon.
That was a pretty round about way for him to decrease your meds, by not even saying anything to you. I personally find it unprofecional (sp) of him to not even mention this to you. How aweful to find out when you read the labe on the bottle.
I really do think with the right PM doc that he/she will try to get to the source of the problem and at the same time treat your pain.
I hear you on working and supporting your family. It is very frightening to watch my own bank account dwindeling down with nothing coming in.
Hang in there Sammy, my prayers go out to you. Be strong hon, I know your tired and I am to. We will travel the raod together just like we have been since last year! (((((((((gentle hugs)))))))))))))))
Unfortunately, I agree this is his warning to you. I kind of missed it with my surgeon. The last script he wrote me, he wrote my script for 1 percocet every 12 hours. That did not cover me at all. He then did a nerve block on me two days later and despite the script not working I decided I could handle it for two days. I thought I would talk to him after the nerve block concerning my meds. Unfortunately something went bad during the nerve block and I experienced the worst pain of my life. I told him how much I was hurting and that the percocet at 1 pill per 12 hours was not taking care of my pain. He stated that the nerve block showed I needed more surgery, I had been on meds to long, and the bottom line was he refused to write a script of anything. I sat 2 weeks without any basically any meds and in the worst pain of my life because my GP was on vacation and no one else in the office would take care of me despite it being documented in the records about my back. It was the worst time of my life and when my gp came back she took one look at me, asked if I had someone here with me, left the room and came back with shots in her hand. Then she said, now lets figure out what meds you need for at home. I thought I would kiss her.
I am telling you this to beg you. Don't let this go on. I would hate for this to happen to you.
Monday morning, I want you to pick up your phone and call your surgeon and primary for a referral to a pain management doctor. Be your own advocate. Remember they are not hurting, you are. Please take care of yourself. I say this because I would hate for you or my worst enemy to go thru what I went thru.
Hi Sammy, There are all kinds of pain management docs and facilities, Some simply take on CP patients and prescribe opiates as long as the patients comolain.. This seems to be the new trend in post op. Surgeons says it's time to decrease or discontinue meds so the patient says no way, and looks for anyone to continue to prescribe despite what their surgeon thinks.
There are also PM docs that have a physical medicine and rehab background called Physiatrists'. It sounds like that's what you need. Not just a doc that will continue prescribin until you decide you no longer need them. A physiatrist can continue your basic pain needs and continue your rehabilitation. They can refer you out to a thoracic specialist do some testing and get send you out fot a surgical opinion. Please consider only a surgeons opinion counts when it comes to more surgery. What your PM or GP think really doesnít matter. Even if they say you need surgery, if a surgeon doesnít think so, itís not gong to happen.
It's just a pet peeve of mine when non surgeons give surgical opinions and don't even bother to refer a patient to an actual surgeon. There are too many PM docs out there that will simply medicate your pain and not treat the problem. Don't let this happen because if you don't treat the underlying problem with anything other than pain meds or palliative care, it may never get better and the window of opportunity to to correct the problem may close.. Many Physiatrist do practice PM but their goal is rarely to keep patients on opiates or meds indefinitely. They do physical manipulation, like a chiro, they can treat deep tissue and myofacial pain, these are the docs that usually step in after major injuries that require more rehab than the initial surgeon is used to but don't need to go to an inpatient facility.
IMO pain management is for chronic pain and what you describe isn't chronic. It's part post op, rehabilitation and possibly a missed injury. Taking care of yourself and getting whatever is damaged fixed should be your major priority, not just masking the pain as many people choose to do. You owe yourself better and pain management isn't a cure it's a way to mange chronic pain that isn't going to get better or can't be corrected. I know there are people that see PM as a way to avoid back surgery when back surgery could relieve their problem, but attitudes are changing and if a patient wants to medicate rather than fix, they feel they have that right. It's not necessarily what's best and their could be major consequences like missing the opportunity to fix something or developing chronic regional pain syndrome by putting of the inevitable for years until the window of opportunity closes for a successful outcome from surgery. Patients want to make these decisions and PM docs allowing it is doing harm and breaks the Hippocratic oath in many peoples eyes. The opposite side of the spectrum is that nobody should have to endure any type of pain or discomfort when all those nice pharmaceutical companies made meds 10 times stronger and longer lasting than had been around just 12 years ago. Now a PM doc and patient can mask some of the most painful conditions and problems that could be fixed, for so long that the problem will never be able to fix.
I'm not saying I think the surgeon is right and you need to learn to live with the remaining pain or deal with it until it improves, but this pain isn't chronic and IMO you would be doing yourself an injustice to find a PM doc that is wiling to mask as much pain as possible and never bother to look for potential solutions like another surgery in your case. One of the differences between chronic and acute pain is that a person with acute pain like after a car accident, may have many injuries but the worst injury is what they feel the most and complain about and that gets the most attn. CP patients brain chemistry and nervous system has changed so that we can feel more than one type or source of pain. Someone with diabetic neuropathy will complain about both feet feeling like they are on fire, Where someone that had both feet broken would complain about the foot that hurts the worst. It sounds like your shoulder injury was the bigger problem and now that it's fixed, your noticing how messed up your ribs feel, That's more like acute pain than chronic pain and IMO, PM docs should be treating CP, not anyone that complains that their surgeon cut them off to early. There is a better answer than finding a PM doc wiling to continue to prescribe if he isn't going to work with you towards resolution rather.
If there is a mechanical problem that needs to fixed it will simply take more and more to mask the pain and your odds of surgical success with every passing month that nothing is done to move towards resolving the problem. PM docs and pain meds the rest of your life should be the end of the line when a problem can't be fixed. That's just my opinion, I'm not going to debate a patients choice to make their own medical decisions as far as not having surgery or trying other methods.. However fear of surgery and additional pain is a poor substitute for an actual medical degree and years of practicing medicine. Sure we know our bodies better than a doc, but it doesn't mean we know what treatment plan is best although PM docs give patients the choice every day.
These are just opposite ends of the PM spectrum. My point is, it doesn't sound like your problem is chronic pain yet, it's trying to rush a recovery, not enough rehab and not looking into the cause of the rib pain you now feel because your shoulder is getting better. This is where a physiatrist and or an ortho surgeon that specializes in the thoracic spine would be more useful. A PM doc is just going to mask your pain, not resolve your problem, and pain becomes harder and harder to mask if you don't treat or try to treat the underlying cause
You do have other choices aside from PM where you trade dependence on pain meds for the ability to work but loose the opportunity to resolve your problem if surgery is really what you need..
Dave, first of all, I would love to be off pain meds trust me. I was seeing a physiatrist for months before surgery, went through pt, injections tigger point & cortisone everything to avoid the meds. He did not want to continue managing the pain because he did not deal alot with pain meds.
In no way will I see any doctor that will not continue to try to eliminate or look into the cause of the pain. I want as much as my life back as I can get. I know the meds are just a "bandaide" so to speak. On the flip side in no way can I deal with this pain on my own. I have tried every single thing requested by every doctor I have seen. I went from someone who detested meds to one who needed them to survive.
As far as the surgeon goes, I do respect the fact that he needs to wean me off, but thus far they are all linking the rib problem to the shoulder & someone has to treat it & he is treating the shoulder, which I was informed by his nurse can take up to a year to heal for some people. God knows I hope that is not the case for me.
Because this pain is in the chest alot it is not only painful but scary.
My pcp's office refers to me as a cp patient which makes me see red.
At this point I don't know anymore I just don't want to suffer. This is not pain that I can live with. I just can't breathe when it gets bad. No other way to put it.
I am making an appointment today with my pcp, I just don't want to wait around to find that the shoulder is healing & I am still going to suffer from something else. I have pretty much reached my limit. I just don't see where two PT's from two different facilites can agree there is something up in that rib area & not one doctor ever take it seriously, for that matter I don't even remember anyone of them really examing the rib area.
So please wish me luck. Sammy
Hi Sammy, I don't blame you, I would keep banging on everyone's door possible until someone takes your rib problem seriously. I know I would try to get someone to at least take X-rays or a MRI to prove to me that there's nothing wrong with my ribs. For me, it's hard to believe that your shoulder surgery is causing your ribs to be hurting you like that. That's just my opinion on the matter. I know how hard it is to get this doctors to listen to you when you have pain and yet they make you think it all in your head. Even worse when they treated you like some kind of drug seeker. I've been there before when I've been treated from being a hypochondriac to being Manic Depressive. I had a near fatal car accident when I was 19 which was 24 yrs ago. I suffered alot of nerve damage from the car accident but no one seem to realize that or didn't fully understand the magnitude of the nerve damage. Now 24 yrs later, due to no one taking me seriously, I have lost full use of my left arm and have only about 30% usage of my right arm. In fact, my left arm is locked in a position where my left arm touched my left shoulder. It wasn't until I had fully lost all the use of my left arm did anyone take me serious. MY own family has treated me like I was crazy and that nothing was really wrong with me except that I just was to lazy to work. So if I was you, I would keep trying until I got someone to take a look at my ribs. They might not find nothing wrong but at least it will give you some peace of mine.
RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
hey sammy. we have talked about this before as your plan 'b', a good PM to take over your care til this situation gets figured out. like i mentioned in the other thread,that MRI for you right now is just plain crucial just to see for certain what IS going on in there hon.
i still think given your symptoms(sweating,swelling,hypersensitiv ity to touch,extreme pain) that this IS somehow also a SNS related or generated issue too. seeing a PM(most of them are anesthesiologists or have them in their clinic),who could simply do that stellate injection i told you about REALLY could help tons in obtaining not only a Dx but also relieve some of your pain if this is indeed a sympathic issue too. this just doesn;t "sound' normal to me hon or your PT person. i was thinking about the physiatrist thing too like dave just becasue they really do know the inner workings of all things muscle/nerve related. mine got me able to walk and use a lame hand again. but given that you have already gone that route, getting the MRI done and also that stellate,i really do think should be your main priorities right now sammy.
you really just DO need to know if your SNS is actually involved in all this. that stellate would tell you. you also need to be able to tolerate your day too with appropiate pain control,that PM could help you alot with that as well. honestly sammy,if they are feeling that this is turning into a chronic pain type situation they will be referring you out from your surgeon soon. he is already kind of showing you that with the reduction in your pain meds. you need to get that ball rolling now so there is no interuption in your pain management when he does release you. planning for this now will just save you alot of hassle and pain later. but i would very very highly recommend that stellate as soon as possible. if this is sns related,the sooner you get treated for it,with the usual first step actually being that stellate,the better managed it will be and less out of control it will get with time.
finding out what IS actually going on inside that area with the MRI(do what i told you to with the ins co) and getting the diagnostic stellate really should be the way to go here next. just getting these two things done would really rule in or out many many possible generators for the symptoms you have been having. sometimes you just have to take matters into your own hands in order to get your real medical needs met.
i would also just do some basic research on CRPS or RSD just to compare symptoms. ever since you mentioned the sweating even before your surgery was done sammy,well you know what i have been thinking here pretty much all along. you just NEED to know either way so it can be treated asap if it happens to be SNS related. the thing is sammy,if this is indeed some level of SNS involvement,that stellate WOULD help alot with your pain process.
like i said before,i do have pain post op that does get a bit out of control at times from that surgery,but yours just really appears to be wayyy out of proportion right now(and previously too). i just want to see a post from you here at some point that says my pain is actually down and things are getting better. i want that soo much for you hon,really. you just need some answers here very soon. i would defintiely talk with your surgeon about his thoughts about how this pain process actually is and what 'he' feels is causing it. also,obtain all his clinic notes from him sammy, these would be pretty telling about how his overall impression is of your situation. they can give you some insight into what he is thinking about your pain issues.
i do wish i could do more to help you hon. just do what needs to be done in order to know where you actually are at and what your next step should be. and as usual,keep us posted. good luck sammy,Marcia
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.
Sammy please don't take the labeling of the cp patient as bad. It simply means that you have had chronic pain for more than 90 days. Unfortunately you have had this pain for at least that long. (I am so sorry because I am right there with you). This does not mean that you can't get better and it does not mean that we stop looking for a solution.
I pray that you can get into a pain mgmt program soon that will continue to help find an answer to your pain. Good Luck.
Thanks guys I will be talking to the surgeon monday about that. I am fed up & scared. I am just so upset to come out of this surgery & have some of the problems remain. I feel like I am just hanging on so to speak. As I said in the other post cardiac tests this friday & back off work, which is probably for the best for now. I have to get through one more day this week I think. I am just so upset, I am sure you all understand. I swear without you all I would go crazy not knowing what to do. What happen to doctors that care? I will be praying the surgeon is a bigger help then the pcp was today. Please keep me in your prayers. Sammy
Sammy, I think once you have your pain mgmt problems sorted out you will be able to relax and concentrate on letting your body heal. I soo understand the anxiety about everything -- I have been there.
Thanks pepper, I always put things off & end up regretting it, but I had to see if the problem would kind of diminish as the shoulder healed, but when it comes to the ribs interferring with my breathing I have no choice. I am not getting alot of control with the perocet in that area & that is scary. Once the cardiac testing is complete I will feel better. It has me nervous with the aorta thing. I have given it thought since my pcp visit & you really have no choice but to step in & be your own advocate, at times the doctors are not going to like it. I can't go through another 6mnths of rehab with out pain control so it has to be addressed. you know you can see why the doctors get nervous with all the pain meds but all I can do is what I did yesturday prove I am responsable when it comes to taking them, with all the pain I have been in this past week I have not taken even the oxy because I was not told to do so. Because I am on pain meds every doctor has brought it up so did feel the need to get me point across. You really are not left with a choice, you just can't win at times.
I was really kind of hurt that the pcp just kind of blew the pain off, my gosh he saw how bad the ribs are, you know just said well just stay on the vicodin, well I am not on vicodin. He is suppose to be a good doctor but I did not get that from him, Whether I made him alittle angry or the PT with her note of concern I am not sure, but someone has to do something. I just told him I can't keep going into urgent care or ER, what am I suppose to do? I have to be able to breathe. I am hoping to get better with rest, the thought of going back to the way I felt last year depresses me, never knowing if I will be able to get control of the pain or be able to breathe. I just break out in a sweat & shake when that happens, it really is scary. I know noone would be able to live like that, & it is so hard for my family to go through all of this again. I really feel I have no choice but ask to see a PM. I appreciate everyones advice & find courage to deal with this from you all. Thank you so much for being there for me. Sammy
Sammy, lets face it in the modern world some doctors are not diagnosticians for difficult cases. I found this to be true at a rather young age of 20. I ran from multiple doctors trying to find out the reason for my abdominal pain. Finally a friend suggested her gp and when I went in and told him my entire story, he said why can't you sit straight up and he went thru a slew of questions. Until he finally said, I am not sure but I think you have endometrosis. I need to send you here to this person to make a diagnosis. To make a long story short, I had some out of the box symptoms that threw the doctors off and he figured it out when he looked at the entire picture of all my symptoms. The puzzle fit together. Part of todays medical problem is that there are too many specialities and very few look out of their box or area of speciality. In my opinion, this is how some cases take forever to be diagnosed.
My problems were not a classic textbook case. I had bladder, bowel, back pain, and abdominal pain. They ran test after test and nothing showed up concrete. I suspect this may be part of your problem too.
I am telling you this because I want you to hang onto hope, continue seeing multiple doctors and continue seeing new doctors until you find that diagnostician.
However --- oh gosh, here she goes -- I strongly believe you need to see a pm doctor to take over your meds so that no one thinks you are drug seeking which we all know you aren't. This will clear up any concern about multiple meds and scripts. Because you see a pm doctor does not mean that trying to find your problem solving stops, in fact it probably is the beginning of your journey to a diagnosis. This will allow the speciality doctors and gp to look deeper without being concerned with your meds.
I also suspect that right now you are extremely frustrated which is 100% justified and along with that frustration is coming some anxiety of the unknown and pain mgmt problems. I think once you have a good pm doctor your anxiety will go down and it will also lower your pain levels down as well.
Just my 2 cents and I pray that I have not offended you and that you understand that I only care.
Thank you Pepper, I am not offended, In fact I needed that as kind of a reminder.
How long did it take you to get diagnosed with your endometrosis?
I am frustarated. I am just so tired of it all, as I am sure most of everyone here is.
I did for a short time feel I may have been getting better, so of course mentally I keep going back & thinking ok what did I do? At the same time I should be able to be active to a point where it is not painful so that is not normal.
Being home again on restriction so to speak may tell abit. I am keeping a journal of sorts to try to piece things together.
The PT reminded me that doctors can get focused on one problem & forget to consider anything else that may be going on, she said to be persistent & keep track of every little detail. Of course since she is working hands on with me she knows there is definantly a problem some where. She could feel some of the throbbing yesturday in the ribcage, thank god. By that time it was settling down abit.
It is so sad & frustrating when you are in so much pain & the doctors just don't take the time to even think it through. I am sick of it all. this has been taking over my life. I feel so bad for my family. Can't even make the simplest of plans. I refuse to let this go, I need control of the pain but more so I need a correct diagnosis.
I already ask my pcp what can cause all of this pain & swelling in the ribs. I hate to think they are jumping the gun & linking it to the shoulder when in may be an entire different problem. I wonder if there is even a specialist out there to handle that area.
Right now I am focusing on finding a pm doctor to help me out here.
Is it me or do doctors not like to take on anyone who can present a challenge?
My concern is what ever is going on in that chest/rib area is not being controlled by the pain meds. I can't sit on ice packs & not move at all forever you know?
This is holding up the rehab. for the shoulder & that is going to really present a problem.
What a mess. I appreciate your advice, & it does give me encouragement, which I desperately need. Bless you, Sammy
I actually had a doctor treat me for 4 years for Crohns Disease and I kept deteroriating. I went down to 89 lbs. for my 5 ft. 5" body. I looked like death and actually felt it. I firmly believe my GP put the puzzle together. I had bowel, bladder, bladder blockages, abdom adhesions, intestines adhering to the abdominal wall, pelvic pain, back pain, vomiting, reflux, intestional distress, over 25 hospitalizations due to dehydration, etc. All in all I don't want to scare you but it took close to 5 years to get properly diagnosis.