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  • negativity from doctors about recovery?

    I understand that every SCI is different. I understand that doctors go from their previous experience and text book answers. I also understand that a doctors job is to also prepare the family for the worst so that the patient is released into a stable environment. What I don't understand is why every doctor we have spoken with since my husbands injury in September feels the need always put a negative spin on everything. My husband is classifed as an C5 Incomplete, Asia B. Since he has been in rehab he has regained the use of both triceps, his index finger and his thumb on his left hand, and more recently is now able to move his foot and flex the muscles in his left leg. Every time he gets a new movement he lets his doctor know, not only because he is excited but also because he knows this is information that they need to know. Every time he tells his doctors he doesn't even get a smile from them, but a "thats good, but try not to get too excited because this may be all the return you get." He has been told that EVERY time he gains a new movement. We understand this, trust me - I am coming to peace with how my husbands condition is on a day to day basis but why do they feel the need to always knock you back down? It has only been 7 weeks since my husbands injury and he already has back much more than they expected. I'm not sure what exactly I expect from them, but a "congratulations" or a smile every now and then might help.

  • #2
    I'm sure 99% of CareCure members will echo your experience. Hope seems to be something doctors are advised not to give out. Not even a little bit.

    On the positive side, celebrate the return. Every little bit helps on the journey ahead.

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    • #3
      Originally posted by Van Quad View Post
      I'm sure 99% of CareCure members will echo your experience. Hope seems to be something doctors are advised not to give out. Not even a little bit.

      On the positive side, celebrate the return. Every little bit helps on the journey ahead.

      VQ's right, however, in defense of the medical profession there's nothing worse than false hope.


      Also return can encourage some to just sit around waiting for full return which never comes instead of getting on with life and making the most of what they have.

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      • #4
        What Timaru said.

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        • #5
          Originally posted by Shan103 View Post
          I'm not sure what exactly I expect from them, but a "congratulations" or a smile every now and then might help.
          Have you said that to them?? To your case manager?? Written a letter to the rehab center administrator? While we don't want to give false hope, we DO celebrate even the tiny gains we see in our clients...and we teach our staff that this is part of their job.

          Where is he getting rehab?

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          • #6
            The first five minutes of meeting my/the rehab doctor, he made sure that I knew that I was f'd for life. He also made sure to remind me throughout my stay.

            The happiest I had ever seen the guy is when he brought his dog to work. I thought he was going to dry hump it right in my bed. Dude was a freak.

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            • #7
              The main problem with doctors is....they beleive in medical "science". In "science" there are "laws" that have a cause and an effect. Things seldom deviate from what the "laws" dictate. As "scientists" its part of their job to educate us ignorant patients as to what the "law" says. If the "law" predicts an outcome other than what the patient would like, so be it.

              IMHO, it would be better if doctors realized they were actually "artists", practising the medical arts. It would give them a new perspective on "thinking outside the box" and going beyond what they were taught in medical school.

              While, yes, it is true that if a physician is 100% certain that all of the "Presents with" symptoms exactly fit an accepted diagnosis, chances are very high that the outcome will fit what the textbook says, a medical artist would notice the minor inconsistencies with the accepted diagnosis and investigate other avenues of treatment.

              Too often, doctoring is just another job.

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              • #8
                I couldn't disagree more that there is nothing worse than false hope. People live on false hope everyday. "Study real hard son and you can be President." "If you work hard enough you can make the big leagues." Based upon percentages (on which the doctors are basing their prognosis) the likelihood of becoming President or becoming a professional athlete are very very slim.
                Know whats worth than false hope. Taking away hope from someone. Who the fu#k are they to decide what you can or can't hope for?

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                • #9
                  But don't you think that false hope can lead to unrealistic expectations? The best approach is probably cautious optimism.

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                  • #10
                    The worst thing a doctor (Head of Neurology at a major University Hospital) was "The Mayo says you have MS. You're 66, live with it. I've got 25 yr olds to treat. Go home. Get some PT. It might not get worse. Don't come back unless it does".

                    Do 25yr olds pay better than 66 yr olds?

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                    • #11
                      Hate to say it, but my 35+ years experience with neurologists is that most are socially retarded. Bedside manner is not part of their training. They get their jollies from the "thrill of the hunt" (ie, trying to make the diagnosis) but not in treatment, and most know little or nothing about rehabilitation or disability management. They loose interest in you very quickly once the diagnosis is made.

                      When my mother was diagnosed with PPMS at age 53, the neurologist she had at the time told her there was no need to see her any more, and nothing more that could be done for her. Didn't even refer her for PT for the drop foot she had already developed with he dicked around for 12 months making his diagnosis. We fired his butt.

                      My apologies to any good neurologists who read this, but that has been my experience.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                      • #12
                        Doctors, mostly are complete dumbasses. Think of it like this.

                        A Doctor may or may not have horned his of her way into medical two ways.

                        1. They are from a medical family where one parent was a doctor as well and this kid saw the easy money involved and had the mid range intelligence required to go into the field themselves and if you are from a monied family you will have the rescources to go to university, college whatever its a cruise.

                        2. You have a massive opinion of yourself because of how good your marks are at school and like the noteriety that might come from being a doctor, so you go into the feild when really you could have studied to be a mechanic and get the same job satisfaction.

                        Most doctors should have went into fields where human frailty is not something they have to deal with. You see the posers swishing about the hospitals with their fucking poxy stethoscopes and massive egos and think, why the fuck did that asshole just tell me i have no hope and I should just give up?.

                        Doctors, in the end are geeks. pure and simple, inhuman geeks and think of this. The ONLY attraction women have to Doctors is this...money...bam i just blew your minds.

                        i once was looked over by this bitch in a white coat at an outpatient facility who should have been deported back to buttfuck thailand or whatever third world shit dump she came from and get back up on the bar and dance pole to keep her dispeptic parents in booze and opium rather that giving me subtle put downs when im in there to get treatment.

                        Dr. PING, go suck my fucking dick you two bit queue jumping whore!!
                        "The problem with self improvement is knowing when to quit." "Diamond" David Lee Roth.

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                        • #13
                          Originally posted by SCI-Nurse View Post
                          Hate to say it, but my 35+ years experience with neurologists is that most are socially retarded. Bedside manner is not part of their training.(KLD)
                          I'm delighted to read that (my sympathies to your mother). Since the Mayo Dxd me, and he just took their word without any further testing, I've wondered if my efforts to get a second opinion was worth my time. Yes, I do have what "appears to be" (the Mayo's words) scolera (sp?) on my spine and I do have spasticity in my legs and left arm...but...I've never had a classic MS attack and the only MS related medication that has any effect on my symptoms is Zanaflex. Baclofen, Gabapentine, steriods, and even Ampyra have had no noticible positive reaction.

                          The question is...who do I turn to? What doctor in Des Moines IA will look at ME rather than the textbook?

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                          • #14
                            Originally posted by willingtocope View Post
                            The question is...who do I turn to? What doctor in Des Moines IA will look at ME rather than the textbook?
                            You might want to check this website for physicians who provide care to people with MS, and who are recommended by them.

                            http://clams.org/goodocs.html

                            People with PPMS are usually diagnosed in middle-age, and do not have attacks (exacerbations) and remissions, but instead a fairly steady downhill loss of function. The immunomodulating drugs also have no evidence for use in this type of MS, although some neurologists will still prescribe them.

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • #15
                              Tell ya, I could go toe to toe with any of these twats on a intellectual level and make em look like displays at a museum dedicated to the socially challenged.

                              I've lived life hard...but most of all i have lived shrewdly, I've experienced just as much or more than any dickhead with a title, I've lived on the edge so long I make Steve Tyler look like a catholic priest...I am a rolling contradiction and an anathema to what society considers to be a handicapped person should be. Doctors...ppph superannuated mummies boys and that's the women docs too. Give me a week in a hospital pretending to be a doctor every hot nurse will be banged up pregnant, the bins will be full of empty beer cans and not one door will have a handle left on it!

                              You will work fucking hard before you get my respect.
                              "The problem with self improvement is knowing when to quit." "Diamond" David Lee Roth.

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