Story of a patient: This will always be a mystery to me (9)
Thanks to the understanding and support of my neuroradiologist, I received information about my pain. But many questions remained open. After researching my illness, I reconnected with my neuroradiologist to discuss it.
Since there are only a few doctors around the world who have experience with Tarlov cysts, I needed his advice.
While waiting for news from a specialist of Tarlov Cysts, I again consulted a neurologist hoping for pain relief. One of his conclusions: “I can offer you cryotherapy.”
Seeing my astonished expression, and at my request: “this for the Tarlov Cysts?”, he consulted pubMED to check if his proposal was correct, with the final reply: “Yes, you are right, this does not exist.”
Unbelievable but true !!
Knowing that everyone who is a bit versed in his profession knows that Tarlov Cysts are roots of nerves filled with fluid from the spinal cord and brain.
On the first proposal of my neuroradiologist, I went to a specialist in France. At the first interview, he advised me to suction the cyst with a filling of fibrin. This is a very controversial method and my neuroradiologist was not convinced that it was the right solution. During my stay, the doctor made an infiltration, since he no longer wanted to run the danger that could come out. So eager to leave, he did not even have time to talk to me or advise me.
The 2nd proposal of my neuroradiologist was an acquaintance in Toronto, unfortunately we had to wait 3 months before having an answer and the second email was not answered. Later, it was known that he no longer wanted patients since this method of cyst aspiration and fibrin injection was postponed until final approval by the Research Ethics Board. The number of doctors remaining has shrunk again.
(Next article “I decided which doctor”)