I am currently in the 12 week waiting period after a fibrin glue injection by Dr Kathuria at JH in Baltimore on March 8, 2012. All I can say is that the pain has been no better than before procedure so far ( 7 weeks out) and at times worse. Pain levels of anywhere from 2-3 latin flat in my side, to 8-9 after sitting or standing for any period of time. The nerve pain seems tonhave increased, and it feels like someone is trying to rip my tailbone apart. I keep eating "wait until 12 wks up and in meantime take Lortab or Tramadol." Unfortunately narcotics make me sick and I have 4 kids and a wonderful hubby this is affecting. Does anyone have any ALTERNATIVE pain management techniques they have found successful?

Hi Kim from another Kim!

I take Oxycontin and Oxycodone for the breakthru pain and 800mg IBU 3 times a day. Sometimes the only thing that helps my pain are the Lidocane patches....the narcotics make me sleepy, but the patches seem to numb the area and make the pain go away. You leave them on for 5 or 6 hrs at a time. I usually put them on the crease on my butt with them touching the tailbone when I have that pain that feels like someone is stabbing me there and that tends to help a lot. They don't work for everyone, but you should at least give them a try.

Hope that helps!
-K

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

I have massage twice a week, physical therapy. I am using a tens unit, ice pack, turmeric and coq10.