Hi my name is Marilyn and I have had coxydynia for 8 years! I fell in 07 and the x-ray showed my coccyx bones had moved to the left and down beside my anus. The PA said nothing but filaments was holding it in place. Every time I bumped into something, sit too hard, or on a hard surface it would hurt terrible for days. I would fall on my knee and rebreak it and end up back at the ER. They sent me to a pain management clinic who gave me injections directly in the nerves. That helped one week.
In April 2014 I went to advanced health and physical medicine in so much pain I couldn't stand it. They gave me lidocaine injections saturating the nerves, massage therapy, chiropractic care and I felt much better. I was ready to go back to work driving an 18 wheeler!
In June 2014 I took a bad fall and landed on my left knee. I felt the bones go through my muscles and crush. This time it didn't go numb. The pain was so severe I couldn't sit stand or lay without being in agony. I ended up in the hospital eight days with an abscess. They went in to drain the abscess while I was awake and I felt when a nerve was cut. Lost the use of the outside my left leg. I can feel the bones moving! They gave me antibiotics that burned my taste buds out and I couldn't eat. I was finally discharged with wound care and nurses coming out to pack it every day. For a year I have been so miserable I didn't want to live.
June 9 2015 I was sent to a neurosurgeon who gave me an epidural of steroids. In three days a second massive abscess formed. I had to go to the wound care center and nurses had to come out and pack it so it would heal from inside out. The neurosurgeon said the cyst that formed the abscesses was a pilonidal cyst that fed off steroids. He referred me to a different surgeon. The pain has been incapacitating.
Mid June 2015 I saw the surgeon who said he could only remove the cyst but another would grow. He said I would have to have both the cyst attached to my coccyx bones and the bones removed and referred me to Duke. My family Dr tried to get me an appointment with the surgeon at Duke just to find out he could only remove the cyst.
By now July 16 2015 every week the cyst has gotten sore and bleeds. Not the foul smell of an abscess, but blood. My Dr had no idea where to refer me to get all of it taken out. I'm telling you the pain is so bad I hate waking up. I just looked up doctors that could do this surgery and found this site and Dr Hanley (see Doctors and specialists in the USA, North Carolina). I read every story and I know if someone don't fix it soon I'll go crazy or take myself out.
I immediately called my Dr's office and told her nurse I found a Dr in Charlotte that could get this mess out of me! She called today and is getting my mri and ct scans with contrast ready to send to Dr. Hanley. I am sooo happy. My quality of life has gotten terrible. My back and leg hurts so bad I can barely walk. I'm in a wheelchair. This cyst makes my lower abdomen and shoulders hurt constantly. I am sooo tired of pain meds every day just to try to stop the pain and not being able to sleep except taking naps on my side on the couch.
I can't wait to go see the Dr! I will give you follow ups as soon as they get me in. And pray he will take it all out!
Note from Jon Miles:
I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.