I recently became aware that there was a forum with doctors from UCLA, Stanford, UC San Francisco, & UC Davis Med Ctrs that addressed the large influx of patients to those institutions who’d recently been diagnosed with Eagle Syndrome. They were perplexed by the fact these people were asking for surgery to help with their symptoms.
Unfortunately, from what I understood, the outcome of this meeting is that the doctors present mostly agreed that ES surgery is too dangerous to undertake because of the risks involved, & because, in some cases, the outcome causes worse problems than the patient had prior to surgery. Though we know this can happen, we also have evidence, from 10+ years of testimonies on this forum, that more often, surgery helps reduce symptoms rather than the reverse.
How I wish there could have been some of us there, who have benefitted from ES surgery & even some who have not, to share what we’ve learned both about the symptoms & surgery to help enlighten the doctors who were present.
I am sorry that the organizers of the medical forum didn’t have the insight to include some patient testimonies. It also makes me consider that perhaps we need to start compiling statistics regarding the overall efficacy of ES surgery which could ultimately demonstrate that a surgical approach to ES treatment is very worthwhile.
Wow, not surprised to hear this. This just confirms what many of us have already learned on their painful journeys to diagnosis. That many doctors just don’t listen and discount patients pain. We all know that Eagles syndrome can cause massive pain and the chronicity can disrupt our lives.
In the hands of the right surgeon…an experienced one, the outcomes can be better. I like your idea of compiling the statistics on outcomes. # of years to get diagnosis,etc. Im curious about what kind of forum this was. Was it a webinar? Who sponsored it? How can we add all the stakeholders (patients) into future forums. Maybe we can draft a petition type letter, we can all sign and send to this group to open their eyes and minds? It might be a good time to form a task force/patient group and try to get the ES docs we do know to be on the advisory board and develop some sort of strategic plan to educate these doctors. This is something I have expertise in.
Without the inclusion of patients who are the effected ones, these docs are not looking outside the box and getting what is is like for the patient.
Such a shame! There is one research paper we have a link to in the Newbies Guide Section which mentions the success rates for surgery- can’t remember the exact figures, but they were quite high & the report stated that when surgery wasn’t successful it was often because not enough had been removed…
I completely agree!! -“Without the inclusion of patients who are the effected ones, these docs are not looking outside the box and getting what is is like for the patient.” The task of compiling statistics feels daunting, but it would be great if it could be done.
I’m sorry I don’t know if the meeting was a webinar (probably was) or a Zoom meeting or who sponsored or initiated it. My source most likely doesn’t know either, & the doctor who shared the information isn’t someone I see, so I’m not sure how we could find out. Any suggestions?