I've been dealing with this question over and over in my battle for care and accountability, but somehow I've always managed to miss the opportunity to ask that question when the opportunity arose. Finally I've asked and below is the answer.
I asked this question to Dr. Frank Feigenbaum, a specialist in diagnosing and treating symptomatic Tarlov Cysts. This is the answer I got in return from his dedicated and loyal surgical assistant Debbie West. Thank you Debbie for your time and commitment!
"Dr. Feigenbaum can diagnose a patient because he has the experience and knowledge to do so. We go by the MRI and the patient's symptoms. We can see the cysts and the nerve compression and if it correlates with the patient's description of signs and symptoms the diagnosis is made. For all those critical audiences look at this way - a radiologist can look at an x-ray and diagnose a fractured bone. They can also look at a brain MRI and diagnose a brain lesion. They never see the patient!
A very knowledgeable and experienced neurosurgeon can diagnose a multitude of issues before they even see the patient, a brain hemorrhage on a CT, an aneurysm on an angiogram, a tumor on a brain MRI, a herniated disc on a MRI of the spine, a spinal fracture from trauma, etc. Need I say more? Of course they will at some point see the patient before actually treating them."
Debbie's response certainly makes sense to me. I hope this information helps some of you to feel more confident in reaching out for your diagnosis from a distance.
Some journeys are personal, some journeys aren't. This is a Canadian journey to be shared with the hope of learning, helping and educating others along the way. I'm an open book..... I hope you enjoy the read.
TARLOV CYSTS - Canada the misinformed!!!
The rare diagnosis of Tarlov Cyst Disease poses significant challenges in the realm of medical care.
Most Canadian Medical Practitioners lack the expertise to accurately diagnose, treat, or manage this condition. As a result, patients often find themselves navigating a healthcare system ill-prepared to address their needs, leaving them feeling lost, scared, and isolated. This lack of medical understanding perpetuates feelings of misinformation and uncertainty among Canadian patients.
Through this blog, I aim to share my journey of navigating the Canadian Healthcare system while living with multiple rare disease diagnoses. I have dedicated myself to learning as much as possible about my rare diseases, hoping that my experiences and hard-earned self-education can support and guide others on their own rare disease journey.
Together, let's shed light on the challenges those living with rare diseases face and work towards a more compassionate and informed healthcare system.
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