Hi, I am Kathryn with 5 Tarlov cysts from S1 to S3 that were recommended by Dr. Feigenbaum to be operated and I declined. At times, the pain in my tailbone will increase to Level 9. I discovered if I picked up something heavy or walked uphill or drive long distances either as a driver or passenger, the pain would return the next day or second day. So, now I avoid these situations as much as possible. I do have sciatic pain going down my left leg and right leg that affects my last toes when walking, have burning nerve pain, pins and needles, bulging disc at L3/L4 with spinal stenosis, osteoporosis. I have realized that it is something to do adjust what you can do and cannot do. When I spoke with Dr. Feigenbaum he stated no guarantees. I have read on this site that other people are worse off when they decide to have the operation but some are better. I also read that the cysts can come back! The Medical Community hopefully will becoming more knowledgeable in the future. I am not willing to take that chance at this time. IF the pain becomes unbearabe and I am unable to function by myself, then l might decide otherwise. Right now, I do strength training exercises as in pilates and yoga, meditation, and void anything that might make the symptoms worse. I do not take pain medication except for amitryptoline 10 to 20 mg at night and extra strength Tylenol when needed. Finding more peace within myself about dealing with pain and how to manage has helped me to avoid surgery. I am 62 years old and hopefully another 20 years or more without surgery. Surgery is so invasive! You could be worse or better if you had surgery. It is a crap shoot! My advice, avoid it as much as possible. Find other ways to endure the inconvenience of excrutiating pain at times. I am on Social Security Disability due to Tarlov cysts and other medical issues. I know longer have to work which is a Godsend. I wish you peace of mind in whatever you decide.
Kathryn