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!