Hi Telvaker, I share your pain and concerns. I have been dealing with this TC-related pain since March this year. Back in November 014 I was diagnosed with mild hip bursitis and was given a cortisone shot that did nothing. Did PT, went to chiropractor only to find more pain. I requested my orthopaedic doctor an MRI. She insisted that that was not necessary and I insisted that I was the patient and the one suffering. MRI showed mild bursitis and the presence of multiple tarlov cysts on S2-3, the largest on the left 2.3 cm and the largest on the right 2.7. She said not to worry about cysts because they don't cause problems. I believed her, but started to inquire about the nature of these cysts. The sole idea of having in my body something that didn't belong there made me worry. In January my hip pain disappeared and I started to have all sort of urinary problems and severe related pain. Saw a bunch of doctors, urologists, urogynecologists, gynecologists, vascular surgeons, etc. to find that I had nothing in that department. I March urinary problems subsided and I started to have severe, SEVERE, low back pain. I saw again my orthopaedic doctor and again, TC are harmless. Not believing anymore what she said, I went to back specialists, neurosurgeons, and a pain specialist--all in Boston. They all agree that TC were nothing to worry about and that they were asymptomatic. One back specialist said that in my case these TCs weren't compressing any nerve. Another back specialist (dr. Saechim Kim) said, "No one operates these cysts and no one should". Neurosurgeon from Beth Israel (dr. papavasilous) said that my cysts have been always there. At first my pain specialist said that they grow so slowly that the structures around them have enough time to accommodate without causing pain. She treated my for Sacro Iliac Joint Dysfunction and gave me two SI Joint Steroid Injections. The first one, on June 9th, brought my pain down from 10 to 6. The second one, four weeks later did nothing. In fact, after injection I have been miserable. Now pain specialist admits that perhaps cysts grew and pressed structures around. I have very bad pain in the sacrum, no numbness or tingling. Sitting down and sleeping on my back are two things I took for granted before, now these two cause unforgiving pain.
I have done a lot of reading on TC, both from social media and professional articles. The first time I saw the name of Dr. Feigenbaum in TX, I was suspicious. I thought "what if he is a money maker" etc, etc. The more I read, the more I believe he is the only in the US who has devoted his professional life to understand and improve surgical techniques to operate TCs. Recently I came across a British newspaper that talks about a Dr. Adrian Casey in London who has conducted three surgeries on TCs and has been in communication with Dr. Feigenbaum.
I will continue with my pain specialist (have my next appointment this Friday), but I am in the process of putting together the application for a phone consultation with Dr. F. I was told that the waiting list now is 5 months and that all the patients before me are all TC patients. I continue to read, testimonies and journal articles. I am in pain, trying to juggle my everyday obstacles. I have cried oceans, like probably everyone in my situation, but I am not going to sit and do nothing. I am so much looking forward to the time Dr. F calls me to discuss my case. I wish you the best of luck.