First of all I want to begin by praising those who have been called into the medical profession. Without their care and dedication, we would all be lost.
Medical advancements and the ability to have new understanding of the human body have exploded.
Diseases that were once considered to not be real, physical components to a person’s suffering, have been reassessed and proven to potentially be life altering, such as Tarlov Cyst Disease.
As much as medicine has advanced though, our current system is still broken. Not only for patients but also for the medical practitioners. They WANT to help every patient but they barely have time to address the patients where they DO understand their conditions.
Their typical day usually consists of a couple dozen patients that get a 15 minute appointment.
In that time they have to review the chart, listen to symptoms, assess tests and treatments, while trying to listen to the complaints of their patients, who can often be argumentative, because the system is broken…
Then they have to leave that room, forget that patient, and start all over again in the next room.
When do they have the time to research the latest papers and findings for ONE patient? Certainly not at the end of the day, when they are exhausted and expected to go home, leave work at the office, and participate in his or her families.
What are we asking for from our medical team?
With that all being said, we hope that you understand a few things about your TC patients.
1. That you can consider that a patient with TCD might be symptomatic. Research has proven that TCs can cause symptoms, sometimes catastrophic, and the earlier that they are recognized, the better chances a patient will have to control or treat their disease. They can do this through surgery with a TC specialist, or implementation of protocols that can control neural inflammation, pain and symptoms, before becoming catastrophic.
2. That you take the time to investigate TCD. It’s understandable that you don’t have a lot of time to learn about every rare disease for every patient. That’s why one of my first recommendations for TC patients is to create a folder of their own research and give their medical teams hard copies. If a patient makes this effort, please look through the folder. Then investigate further if your questions haven’t been answered.
3. Encourage your patients to do their own homework. The information is abundant these days. There are ways for your patients to live better, less painful lives, and there are new discoveries every day.
4. Acknowledge that just because you don’t yet understand this disease, doesn’t mean that you can’t help your patient. Have compassion for their suffering. Some patients have been living with the effects of this disease for years, or even decades, going from “ologist” to “ologist”, and being told that there was nothing wrong with them.
The mental effects of this treatment have simply made their suffering much worse. If the doctors say “there’s nothing wrong with you”, what is their family to believe? Why should their spouse believe the reality of their suffering?
Having a doctor simply validate their suffering can bring mental healing and validation!
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