“Our central premise is that doctors are not listening to their patients, leading to misdiagnoses—and often, no diagnosis at all.”
– Leana Wen, When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests
Worth The Fight (WTF!) and Chiari Bridges have always been committed to patients sharing & learning from one another's experiences.
There have always been people that get upset that we offer nonprofessional advice on everything from symptoms to MRIs, so we thought we would take a minute and explain why we do it (and we not only do it, we encourage everyone to get familiar with MRIs and learn to help others as well)…
We ARE NOT medical professionals (we usually say that when we respond and we have disclaimers everywhere, letting everyone know that the information shared in our group should NEVER be taken as a substitute for medical advice). Since we tend to be less dismissive than our doctors, there is not much harm that can come from it other than us being the thorn in the side of some doctors that like to say that “everything is fine” when “nothing is fine.” We are not trying to appease any doctors here.
The truth is that while we are dealing with pretty serious conditions, the neglect and incompetence that many of us receive year after year by the people who go by an oath to “first do no harm,” is indeed harming us. Following my car accident, I had MRIs for 10 years with each bearing a report that nothing could be found to explain any of my symptoms. When I was finally diagnosed (dx’d) my neurosurgeon said that he had checked back through my images, and my Chiari Malformation (CM) was evident in the very first MRI. It would be one thing if that were unusual, but it’s not, it is the norm (even amongst neurologists and neurosurgeons who are considered specialists in their fields). And it doesn’t end with getting a diagnosis - post diagnoses the overall lack of knowledge concerning Chiari and its numerous comorbid conditions are astounding!
Why do we look? Because they don’t.
Why do we give advice? Because we would rather make some people mad (even doctors), than for patients and their families to continue to suffer more damage (or worse yet, lose their lives).
Why? Because we care. We care more about the health of the members of our community and try to intervene in hopes that the mistakes that were made with us are not continued to be made.
If we see something that we have experienced or researched, we have chosen to care less about being politically correct and more about our community.
Why? Because if we fail to change this fight, our children and our children’s children will face the same problems that we face.
So we look, and if we see something that concerns us we share what we see (in our nonprofessional opinions). And we usually try and help educate them about what we see along with documented studies on it whenever possible, so members can make an educated stand for themselves.
We are not diagnosing anything, not prescribing anything, we’re just giving them ideas to talk about with their doctor(s) or a new doctor, so they can make the most of every appointment.
We realize that some still won’t like what we do and being a member of our Worth The Fight (WTF!) community is a choice. I actually used to feel similarly about some of the medical advice some of the groups give out. But we’re not telling anyone to go against their doctor’s orders, we’re just pointing out things that their doctors may have missed, at that person’s request! Nobody is bullied into posting MRIs. Nobody is bullied into taking our advice. Nobody is bullied into surgery or any other treatment in our community! Here members are encouraged to believe in their capacity to retain knowledge again and advocate for themselves knowing that they have a right to voice their opinions, and don't have to jump into treatments that they may not fully understand… to love themselves that much!
There have always been people that get upset that we offer nonprofessional advice on everything from symptoms to MRIs, so we thought we would take a minute and explain why we do it (and we not only do it, we encourage everyone to get familiar with MRIs and learn to help others as well)…
We ARE NOT medical professionals (we usually say that when we respond and we have disclaimers everywhere, letting everyone know that the information shared in our group should NEVER be taken as a substitute for medical advice). Since we tend to be less dismissive than our doctors, there is not much harm that can come from it other than us being the thorn in the side of some doctors that like to say that “everything is fine” when “nothing is fine.” We are not trying to appease any doctors here.
The truth is that while we are dealing with pretty serious conditions, the neglect and incompetence that many of us receive year after year by the people who go by an oath to “first do no harm,” is indeed harming us. Following my car accident, I had MRIs for 10 years with each bearing a report that nothing could be found to explain any of my symptoms. When I was finally diagnosed (dx’d) my neurosurgeon said that he had checked back through my images, and my Chiari Malformation (CM) was evident in the very first MRI. It would be one thing if that were unusual, but it’s not, it is the norm (even amongst neurologists and neurosurgeons who are considered specialists in their fields). And it doesn’t end with getting a diagnosis - post diagnoses the overall lack of knowledge concerning Chiari and its numerous comorbid conditions are astounding!
Why do we look? Because they don’t.
Why do we give advice? Because we would rather make some people mad (even doctors), than for patients and their families to continue to suffer more damage (or worse yet, lose their lives).
Why? Because we care. We care more about the health of the members of our community and try to intervene in hopes that the mistakes that were made with us are not continued to be made.
If we see something that we have experienced or researched, we have chosen to care less about being politically correct and more about our community.
Why? Because if we fail to change this fight, our children and our children’s children will face the same problems that we face.
So we look, and if we see something that concerns us we share what we see (in our nonprofessional opinions). And we usually try and help educate them about what we see along with documented studies on it whenever possible, so members can make an educated stand for themselves.
We are not diagnosing anything, not prescribing anything, we’re just giving them ideas to talk about with their doctor(s) or a new doctor, so they can make the most of every appointment.
We realize that some still won’t like what we do and being a member of our Worth The Fight (WTF!) community is a choice. I actually used to feel similarly about some of the medical advice some of the groups give out. But we’re not telling anyone to go against their doctor’s orders, we’re just pointing out things that their doctors may have missed, at that person’s request! Nobody is bullied into posting MRIs. Nobody is bullied into taking our advice. Nobody is bullied into surgery or any other treatment in our community! Here members are encouraged to believe in their capacity to retain knowledge again and advocate for themselves knowing that they have a right to voice their opinions, and don't have to jump into treatments that they may not fully understand… to love themselves that much!
We used to do everything in our Facebook group (one post at a time), but when we surpassed 7,500 members, we had to rethink things. There were just too many people needing help!
We now have two separate methods for members to get help in looking at their images. You can choose on or the other, but we recommend both!
We now have two separate methods for members to get help in looking at their images. You can choose on or the other, but we recommend both!
Our Members' Think Tank allows members to post their images in our Facebook group for relatively quick feedback. All members are invited to give feedback on what they see. Our admins will try to give input as time allows, but they will not be giving detailed information and marked images on what they see.
Guideline Required? YES
PROS:
• It is a speedier process, if you have a quickly approaching appointment or new symptoms that you find concerning.
• Larger pool of responders might open the doors to additional nonprofessional opinions.
CONS:
• No guarantee of responses.
• Conflicting opinions might be confusing.
• Higher likelihood of things being missed.
• Responses must be kept confidential.
Guideline Required? YES
PROS:
• It is a speedier process, if you have a quickly approaching appointment or new symptoms that you find concerning.
• Larger pool of responders might open the doors to additional nonprofessional opinions.
CONS:
• No guarantee of responses.
• Conflicting opinions might be confusing.
• Higher likelihood of things being missed.
• Responses must be kept confidential.
With our Admin Think Tank, one or more of our admins will sit down with your image(s) and write up a detailed summary about EVERYTHING they see. They will compare it to your symptoms and explain which symptoms might be related to what they see on your image(s). They will explain how one condition might relate to another, as well as provide links that might help you better understand. Once complete, the summary will be posted in our Facebook group (so everyone can learn from it), and a PDF will be provided.
Guideline Required? YES
PROS:
• Reports are very detailed and aimed to coach you in what is seen.
• A checklist is used to help decrease the likelihood of things missed.
• Promised responses.
• PDFs provided in a sharable file.
CONS:
• Lengthy waiting list.
• If kept private, the smaller pool of responders might result in less ideas being shared.
Guideline Required? YES
PROS:
• Reports are very detailed and aimed to coach you in what is seen.
• A checklist is used to help decrease the likelihood of things missed.
• Promised responses.
• PDFs provided in a sharable file.
CONS:
• Lengthy waiting list.
• If kept private, the smaller pool of responders might result in less ideas being shared.
If you decide to post your MRIs for Nonprofessional Opinions (NPOs) at WTF, please make sure that your post/images adhere to the following guidelines. Requests that do not meet our guidelines will be removed by an admin. [go to guideline]
Hospitals and imaging centers in the United States are required to give you a copy of your imaging if you request it.
In the United States, records of imaging are legally allowed to be destroyed after a period of time (usually 7 years or less, depending on the state). For this reason, we recommend that you get a copy of all available MRIs and keep a copy for yourself. [Read More]
In the United States, records of imaging are legally allowed to be destroyed after a period of time (usually 7 years or less, depending on the state). For this reason, we recommend that you get a copy of all available MRIs and keep a copy for yourself. [Read More]
Once you receive your MRIs disk, you will need access to a computer to view them and turn them into two-dimensional screenshots to share in WTF!
You will need to create nested files to save and organize the screenshots. [Read More]
Most disks come with MRI viewing software on them. When they do, that makes it easier. When they don't, the process can be frustrating. This part of the unit is aimed at helping you determine IF your disk came equipped with software and if it did not, how to download free software. [Read More]
It is much easier to extract all of your images and save them to a file before you start looking for the images that we need than it is to have to search for the image on the disk each and every time you want to pull an image.
Learn how to extracting your images and save them as JPGs. [Read More]
Learn how to extracting your images and save them as JPGs. [Read More]
The Nonprofessional Opinion (NPO) Request Form is required for all formal requests with the Admin Think Tank (no exceptions). Once you've submitted the form, you will be added to the waiting list (which is in our Facebook group), and an admin will contact as your name gets close to the top of the list.
