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Dr says I have exhausted all options

itsautonomicitsautonomic LouisianaPosts: 2,561
edited 03/08/2017 - 1:44 PM in Chronic Pain
I hear this often, but is it really ever true ?  Lets take out resources for now because that is a huge part of accessibility to options , but lets pretend you do not have big limits on resources . Also lets exclude the rare type of issues where there really isn't much available for now.  Lets focus on spine issues.

I think people do themselves a disservice listening to their doctor blindly on this subject.  What one must understand is that for every doctor you see there is often a much better one with many more options at teaching hospitals or research hospitals.  When a doctor says you have exhausted all your options it is really a way of saying I have exhausted all the limits of my training and knowledge, which is a good thing to know, but when you take this as the end of any hope it is a bad deal. There are many types of options that I do not think people realize:

1.  Teaching hospitals, who consistently have the best, most current research and treatment options in hand.  They see the worst of the worst, rarest of the rare
2.  Overseas.  They often are not limited by FDA in developing treatments and often in many areas are far ahead of the US.  ADR ( artificial disc ) is one area I can think of right off hand. Ketamine coma for CRPS is another.  Some of these treatments have dramatically changed the lives of someone who previously had no options.
3.  The blend ( its listed on spine health and has many different alternative and mainstream treatments, eastern and western)
4.  Specialty clinics ( clinics that are doing something that may be on the cusp and often not covered by insurance nor proven by double blind testing yet)
5.  Moon shots ( something that probably will not work , but still holds some percentage of odds it will even thought they are low)
6.  Second opinions ( fits with number 1 , but often just seeing another doctor even in area opens up new options.  This is also where research and advocacy fits in )
7.  Your own options ( this is when you take it all in your hands and begin to try different things even if they are not recommended by doctor or risk of getting worse exists, this can be the absolute last resort but you are there in your quality of life)***I do not mean self medication here
8.  Whats around the corner ( developments that can change everything , but not finalized yet.
9.  What we do not see ( treating something else may have an effect on your main issue. Can be mental, testosterone replacement, vitamin deficiency, etc etc)
10.  You are not fully or properly diagnosed yet ( this for me is the larger issue for many.  But 2 years with misdiagnosed hip, 7 years misdiagnosed/not seen annular tear and 4 years misdiagnosed spinal cord/neurological injury I have personally seen what the right diagnosis can open up for a person and its dramatic)


I am sure there are many more options, and often many of these are not suitable for the patient in question and there are risks with each one that must be considered.  The point I am trying to make is that for a doctor to say you have no options is kind of a false claim and one that needs to be evaluated internally/externally before losing all hope.  Its not easy, resources are a huge concern that limits many options, but even for me who is on the rare side finding the right doctor meant options when previously I had "no options"(finances were not a big issue luckily ).  Remember no remaining options really means the doctor is left without options or constrained legally/ethically, but for the patient it might be just the start of their options for getting better.  The lack of options is really a limitation of the doctor, not the patient(even thought they suffer the biggest impact ).  Hypothetically a person willing to try anything and with the resources will never be out of options.
Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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1

Comments

  • SavageSavage United StatesPosts: 7,385
    Thank you, Aaron!
    What a very good explanation of the "no options" situations many face. 
    I think you outlined it very well! ...and it gives so much hope!


    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • dilaurodilauro ConnecticutPosts: 13,562
    Aaron, that is a very accurate description of what is going on.

    Having a doctor that will say "I reached my limit, now lets see who can work with you"   is the type you want.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • nutcase007nnutcase007 United StatesPosts: 941

    Aaron, I agree that rarely are all options exhausted. 

    Your first point of "teaching hospitals" is a two edged sword.  Multiple times I've been dropped by doctors from teaching hospitals because I didn't conveniently fit into their latest research paper or clinical trial that they were running.  I would have accepted the fact that after some diagnostic testing that they didn't want to treat me, but all four dropped me like a lead brick and played the "head game routine".  All four of these doctors were from internationally respected teaching hospitals.  I found out later that all four of these doctors thought way too much of themselves.  Yes, teaching hospitals should be a better resource on complex issues, but can "get stupid" when they hit a case they don't have a solution.

    I'm currently working with a neurosurgeon who in his younger years taught at one of these internationally respected teaching medical school/hospitals.  I have complex structural problem(s) in my neck from an old but serious whiplash.  He performed the last fusion in my neck three years ago.  Both him and I expect the problem moved down my neck from the last fusion.  After many diagnostic tests since the surgery, looking at my neck from many different technologies, the cause of my motor skill impairment and severe pain keeps eluding him and other spine specialists that he has consulted.  This surgeon has kept himself current with the new technologies, even to the point that he is a "surgery investigator of one of cervical spine devices".  I didn't give detail to keep both him and myself anonymous. 

    Just yesterday, he reran an old test that he ran 16 months ago, so I am hoping to hear results next week.  Why did he rerun the test?  As he showed me with all the tests that he has run in the two plus years, he has observed an ongoing determination at the suspect level, but "no smoking gun".

    So what is my point?  I don't now if I can completely answer.  I guess I'm trying to say that one needs to find a doctor or team of doctors depending on the case that listens to their patients.  This neurosurgeon has told me multiple times that he often is able to diagnose a patient by first "hearing their story" and then performing a physical exam.  Most of the time the diagnostic tests are a confirmation of what he most times already knows.  So why am I not fixed?  I just reviewed my last radiology report and I have damage at every level in my neck down to T2/T3.  I just hope that I can get some level of quality of life improvement. 

     

            

        

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Oh yea Nutcase, that is a huge part of it.  I am sorry you didn't get good results with teaching hospitals.  They were a big help for me.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Hi Aaron
    There are not a lot of either of those available here in or close to my area. I did go to one and was that ever a negative experience a huge disappointment. But that is not to say there are not many great ones out there I have just not hit it lucky. 
    My first experience at getting a conference call with ten other Chronic Pain/Spine issues and I will never forget this guy from another state saying to the nurse who was conducting the interview. He said " Have you ever experienced real pain in your life?" Her response was " This is not about me and your questions will be answered when you meet with the three doctor's". They immediately have you give a urine sample and then you meet with an assistant who spends fifteen minutes asking you not the questions she should have and no review of any medical records or tests. She then had a therapist come in ask some questions where is the pain located and has you lay up on a table and proceeds to push her elbow down into your stomach, bend over, twist. They both say "you don't need to be on pain meds this is a muscle issue  and we have the exercises to help you". The thing that bugged me was the assistant typing like a bat out of hell rarely looking at me and both of them smiling the whole time. Oh and then I met the know it all doctor who sits staring me in the eyes and for fifteen minutes proceeds to tell me "we think all your problems are due to muscle and I will be sitting up a schedule to limit you r meds immediately". You know that would of been fine if all the other was not so negative. I did meet with a great physiologist though and he told me I was not depressed I do have reactional stress which was a new one but made sense. I wish I had researched the hospital before wasting my time it has a history of exactly the treatment I received. 
    Sorry who needs to hear my story cause like I said there are so many out there that people talk about as being the answer for them. You give excellent information and suggestions of how to find help I appreciate that.
    Sherri
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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Hope, gosh that sounds terrible and I would have lost it.  I guess it's always a crapshoot with doctors or hospitals even the best ones.  I know for me I was sent to I think #1 and #2 ranked teaching hospitals and that may have made a big difference.  
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thanks Aaron for your reply and just my luck to go to that one :). They sent out a evaluation letter of how they did and at least I got my moment then. This hospital was a combination of both research and teaching there is a highly rated one in the southern end of our state I looked into but my circumstances make that impossible. I am not giving up that is for sure anyway that is how I feel this morning with everything screaming "heh I am here to make you miserable" :)
    Have a good day.
    Sherri
  • nutcase007nnutcase007 United StatesPosts: 941

    Aaron, you listed great points in this posting and I'm not taking any exception to any of them.  I always appreciate reading your insights.

    The neurosurgeon I referenced in my last long rant was not always a saint with me.  There was a period of time that it felt like he had abandoned me.  I'm am not making excuses for doctor behavior, for they are also human (contrary to how some of them act).

    Not to try to add anything to your great points, I've found it very important to have at least one advocate while trying to sort thru options/topics on complex cases.  For me, I've found that I need at least three. 

    Yes, it is a crap shot when trying to get a diagnosis, especially when there is multiple factors.  I will give credit to this site that we have an environment that we can get input from others who understand the frustrations of complex cases and/or undiagnosed cases. 

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Nutcase, add whatever you can think of, we are all learning from each of our individual experiences and they can be so different.  I am glad you are adding stuff, I just listed what I could think of that helped me or I experienced.  I know there is so much more out there.  

    Its good to build a post from all angles because we are trying to help people avoid or consider all the things we had to endure or didn't consider in our journey.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Max_LeeMax_Lee New York, United StatesPosts: 389
    My GP isn't afraid to say that he doesn't know and that he'll run a test or send me to a specialist. He has been pretty good about managing my meds and following up with me on everything. He's super nice and actually seems to want to find answers to my problems rather than slap me with the 'Crazy' label and give up.
    It took me over a year to find him and it's still a struggle to find answers. The people before him just didn't want to work with me and didn't look for answers. They were even rude and quite horrid to people.
    What I needed was a digger. Someone willing to work together with me, their team, and other diggers to find a solid answer for their patient.
    Kieran 
     "The loneliest people are the kindest. The saddest people smile the
    brightest. The most damaged people are the wisest. All because they do
    not wish to see anyone else suffer the way they do.''-Anonymous


    My Story: https://www.spine-health.com/forum/discussion/90688/pain/neck-pain-cervical/help#latest


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