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Research ! - Good and Bad

I think anyone who has medical problems should do as much as research as possible. This way, you will be informed and educated about the condition hat you have

That is what firsts brought me here to Spine-Health in 2006. I had a series of thoracic herniated disc and the treatment was not really effective.
Plus there was not a lot of information about thoracic discs. Everything I read stated

Thoracic discs should not herniate and even if they did there would not be any pain associated with that

Well, I am sure that anyone who has thoracic problems knows how crazy that statement was. But unfortunately, 10 years ago, that was a mindset.

So, I went to Spine-Health to get more information. Honestly, they still didn't have the information that I was looking for. More than other sites, but still not the answers I was looking for.

Whenever you have a situation, you always want to become well versed in the subject area. Be it a condition, a surgery, whatever, you want to become almost the expert. This way, when you do talk to the medical professionals you have a solid base on what to discuss and level of understanding.

That is the goodness of research.

Unfortunately, it seems that with almost anything that is good, there are some potential problems. I can not speak outside of Spine-Health, but I have read way too many posts where people are self diagnosing. They read an article, and the next thing you know they have that problem!
I remember one member, only recently that made a series of posts, each one diagnosing another problem they have, based on what they read.

We all have to be careful here. Like I said to start with, you want to have as much knowledge and information about your situation. But when i comes to coming up with the diagnosis, leave that up to the doctors. But with your knowledge, you would have the information in which to discuss, perhaps challenge what a medical professional is telling you.

The worst scenario I have ever read here was

  • - I have a spinal problem-
    - Doctors are not sure what it is
    - I read and researched and then discovered I have XXXX problem
    - I then told my doctor that I have XXXX and wanted to have this and that done
    - The doctor did not agree
    - So then I was so angry , I went to another doctor and told them they same thing
    - The new doctor said, no, you do not have that
    - So, then I told the doctor, I do have that and I want ABC medication and YYY diagnostic tests
    - and so on
Yes, I exaggerated a bit, but the overall concept is true.

Do your research to become more educated, but not to self diagnose a problem

Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • dilaurodilauro ConnecticutPosts: 9,865
    I think the one that I agree with but also is the most troublesome one is
    itsautonomic said:

    I have been appalled at the lack of knowledge of so many Drs on hard to diagnose things
    It shouldn't be that way. With all the education that doctors receive and if they keep up with medical advances there is no excuse. But in reality this does happen across the country. I dont want to sound like I am coming down on anyplace, some isolated locations with very few doctors may run into this situation. They just cant keep up with the times or perhaps they never had good diagnostic skills.

    Aaron, I know you a big fan of teaching hospitals and rightfully so. The young interns and residents want to absorb as much as they can and want to excel at everything. Larger cities also have an advantage here. They can attract the better qualified physicians. But where does that leave others?

    I know you are a crusader and Aaron, I think if you had the time and energy one objective you would seek is equality in the over all skills of our doctors. You would want anyone to go to any doctor anywhere and receive the same treatment and problem diagnosis. Maybe someday.

    If I dont hear from you again, let me wish you and your family a very Merry Christmas, Happy Holiday and a Safe and Happy New Year
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • itsautonomicitsautonomic LouisianaPosts: 1,816
    Hmmmm, I tend to disagree a bit. I don't think anyone starts off wanting to self diagnose, research becomes a way to put yourself back in control when doctors are not helping you, essentially you are forced to start looking due to lack of help. Speaking only for myself I can say you can take the last scenario and change it a bit to hip problems and take out the asking for XYZ medication except the result was that's exactly what you have and you are very lucky you did your reasearch and sought me out cause at the time he was one of the only Drs in Houston specializing and doing that surgery . 100 percent healed and self diagnosing was correct and led me to right dr and solution. But it is a very slippery slope indeed , my hip was and should have been easily indicated as their were signs that jumped off the page and screamed torn labrum, but that diagnosis wasn't common back then in hip.
    I have been appalled at the lack of knowledge of so many Drs on hard to diagnose things , reasearch and pushing, challenging saved my life and I've been proven right numerous times with spine and neurological issues that without reasearch I would have accepted the answers I was given by first Drs I saw, but I also know the way it can make you feel crazy all the information. Their is an approach to it all and if done correctly reasearch coupled with listening to your own body , trusting you know you body best to respectfully challenge a doctor to find answers is the greatest tool we posses , all the doctors do many times is pinpoint there is truth to us feeling something is wrong and then lead us down path to fixing it, but we knew something was wrong to start most of the time.
    Maybe that's exactly what you are saying in other words, but I don't think anyone wants to have to do it. You don't want to give up and it helps keep the search going if you feel Drs are wrong about your issues. Drs are even guilty , they label patients as fibromyalgia once their testing is negative just to give peace and something to treat, when so many times it's wrong . Human nature is to want to solve the problem, know who you are fighting and so many times you are just so confused. As it's well known people that know me her since 2011 neck injury I've been tested and tested , but in every medical report I've always stated I believe it has something to do with that neck injury just to much coincidence that everything began after, now we are back to that neck injury, spinal cord injury as culprit. The only doubt I had was when Drs testing said it looks ok no major damage, but all along I knew this neck injury started it but not the extent of the damage. So now I'm left thinking if I push harder maybe it gets diagnosed faster, but you risk Drs thinking you are self diagnosing. But in the end doesn't each and every one of us want closure and to get better? If you treat reasearch as a process of elimination and not a first thing that sticks ( and it's hard the longer undiagnosed) you can tremendously help yourself and any great doctor will welcome the challenge to proove you are not correct. My dr and I work as a team I come in and talk about symptoms, ask if this can help, could XYz be affecting it , are we missing this and she explains the ones that's don't , considers the ones that might and tests the ones that could be affecting my health ( this was in the diagnosis phase mostly). I would say that's a bit of self diagnosing filtered through my dr. But we are established , and she always enjoys my challenges because she sees I want to get better and I'm searching for hope in a somewhat hopeless situation and that is a good thing.
    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.
  • itsautonomicitsautonomic LouisianaPosts: 1,816
    Merry Christmas to you also. Honestly, I understand keeping up with all of it would be impossible due to the cost and access to reasearch, funding, training, and I do believe most Drs want to do good. I really don't have a horrible issue with the lack of knowledge , since that's what specialists can help with, what hurts me the most is when the non specialist ( or specialist not as well trained) reaches scope of their testing and diagnosing skills and that's it the problem is in your head. Not having the best skills but an ego small enough to say " maybe I am not the best to figure this out" can go so far. That's how I ended up at first teaching hospital and I am greatful to that dr to this day. When I talked to him recently he joked that he is just an ole country boy and can fix and spine and brain injury but thier is a limit to his knowledge and at the place he sent me they are exposed to the rare cases and get a team of Drs on it. I mean not an ounce of ego, just glad he was able to point me in right direction. Just one of the most honorable things a dr can do for his patient. I respect that guy for that simple act
    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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