Is Nora’s video already been known here?
She is from Austria and searching for therapies that may improve hers voice problems.
I would be surprised if she wasn’t also here in the forum. Anyway, great job of her making the ES more publicized.
Hi TheDude,
Some of our members may have seen Nora’s video, but no one has posted it here or mentioned it. We do have one member who’s ES surgery was professionally videoed & was recently posted on YouTube - https://www.youtube.com/watch?v=aAuJZpYWy8c. It gives a pretty big plug for the doctor who did the surgery & for his clinic which I guess is fair.
I’m sorry for Nora’s situation & wonder if she’d had external surgery whether her post op symptoms would have been less severe. Also, I’m wondering if the surgeon removed her stylohyoid ligaments which were also both calcified to some degree. If she still has those, they could now be causing part of her problems.
One reason we advocate external surgery is because nerves, soft tissues (muscles, tendons, ligaments) & vascular tissues can be monitored & visualized to help minimize the risk of damage during surgery. It sounds like perhaps Nora’s surgeon did some nerve damage during surgery because in intra-oral surgery those structures can’t be seen though nerves can still be monitored.
I sent Nora an email & told her about this forum & offered her some suggestions as well.
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Thanks for that, I’ll have a look. Can’t remember any members from Austria, so I doubt she’s a member already.
Nora even wrote a thesis on stigma in Eagle Syndrome. You can download it here (in German):
The stigma of Eagle Syndrome and its impact on social relationships.pdf (3.2 MB)
Abstract
“This diploma thesis examines women with chronic pain in the throat-head region and
therefore focusses on two different diseases: the temporomandibular disorder (TMD) and
the rare Eagle-Syndrome. Studies of Lennon et al. (1989) demonstrated that TMD patients
who seek treatments often perceive stigmatization as a result of their disease, which can negatively affect social relationships. This diploma thesis aims to investigate if this also
holds true for patients suffering from the Eagle-Syndrome. The ultimate research question
was: „Do Eagle-Syndrome patients feel as stigmatized as TMD patients because of their
disease and does this have negative consequences on their social life?
For this purpose, a quantitative survey was conducted and accessible for both patient
groups all over the world. Overall, 63 female participants of Africa, Asia, Australia,
Europe and North America participated (42 ES, 21 TMD). The results demonstrate that
there is no difference in the perception of stigma with regard to both diseases. Eagle-
Syndrome patients also feel stigmatized and estranged due to their pain. They show a high
number of variously consulted health professionals (14), are less satisfied with their social life and have a lower social interaction. Furthermore, both patient groups experience severe social and emotional loneliness.
Public campaigns could raise the level of awareness of the Eagle-Syndrome and improve
the clinical approach as well as the development of further, possible cures. This might also
be an important step in avoiding a number of negative consequences caused by this
disease.”
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Hi TheDude,
Thank you for sharing the abstract. I expect that each research paper written about ES & each additional bit of publicity it gets will help this syndrome become more widely known.
I concur that the social stigma which occurs is based on an individual’s reaction to his/her symptoms/pain rather than to the disease itself. When we’re in chronic pain whether the cause is undiagnosed or diagnosed, social withdrawal is often the response because the effort required to socialize is beyond our ability to manage. Coping w/ long-term pain is both psychologically & physically challenging. As our brains are working on stopping the pain, our bodies are trying to balance & compensate for it. Lack of understanding of our pain on the part of those who are pain-free can also add to the stigma.
There are two paths I often see taken regarding symptoms/pain -1) complete despair & panic i.e. “Why me? Am I going to survive this?” (Both are valid questions), & 2) optimism i.e. “I’ll get through this & will learn some life lessons along the way.” A combination of the two also occurs. The people w/ the more positive approach often develop better coping mechanisms for symptoms/pain & see a better outcome from treatment or surgery than those who face them w/ despair, thus, they are not as socially stigmatized. Granted most of us have a foot in each camp when suffering, & there are shades of gray regarding intensity of emotion involved in the two scenarios.
Our minds are mightily powerful tools, and we can learn to use them to help ourselves weather even the most challenging “storms”. I have faith in a loving and Almighty God Who I believe allows hard things into my life to help me grow as a person & deepen my faith. An additional benefit is that I learn ways I can help others. My faith helped me have a more optimistic approach to the challenges my symptoms brought into my life.
I understand reaction to pain/symptoms of rare health conditions is unique to each individual & not as black & white as I suggested above, but I also feel strongly that how we approach those challenges can affect the overall outcome & degree of social stigma experienced.
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Words of wisdom. I couldn’t agree more.
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