It took me close to 2 decades of searching to figure out my TCs and even then I had to figure it out on my own. I have been dealing with symptoms my whole life but they started really effecting my life in the early 2000’s.
In our medical system today, we no longer have one doctor who will take the time to study us as a whole and get to the bottom of our disease, especially a rare disease. They just don’t have the time anymore. If you are a patient with a disease that only effects one system in the body, you’re in better hands today than in the past but for those of us whose conditions effect multiple systems, it can take years.
One of my friends and co admins in the support group online, Beth Cooper, helped me write this particular answer.
Doctors treat what they know. They go to medical school where they are often taught that Tarlov, Perineural, Nerve root/sleeve cysts are not symptomatic. Then they choose a specialty and complete their education.
Orthopedic doctors treat bones and supporting tissue, Gynecologists treat the female reproductive system, Neurosurgeons treat our brains and spines, etc. They study for the conditions they learned in medical school and practiced first as residents. Now each of them are practicing their specialty, often with other doctors within that specialty who have chosen to focus strictly on one area, such as diseases like MS or Parkinson’s or critical injury or tumors. Remembering that their knowledge and experience with Tarlov Cyst Disease is very limited and seldom first hand, they will run every test and recommend every treatment they DO know about, or refer us on to another specialty, such as gynecologists who will diagnose pudendal neuralgia, or urologists who will diagnose interstitial cystitis, or gastroenterologists who will diagnose IBS, and so on. This is why so many patients go for far too long before being correctly diagnosed and receive proper treatment from a TC specialist. We should never ignore symptoms, such as persistent urinary tract infections or chest pains (Always check the effected organs because it could be life threatening) but we should always remember that there can be a condition none of those doctors will try to connect to the symptoms we report. That of Tarlov Cyst Disease. This is why it is imperative that you learn everything you can by reading and research. Only then can you make informed decisions about our care. Two of the specialists in the USA offer free or low cost phone consultations. I cannot stress enough the importance of getting those opinions. Having them review your images and then give you their diagnosis and recommendations can be invaluable in making future decisions about testing and treatment.
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