About 10 days ago, when I first joined, I posted a topic called "Failed back syndrome and coccydynia - need advice". Some people responded, but about the FBS. I am desperate to find someone else on this forum who is or has suffered with severe coccygeal pain.
Briefly, I have FBS after 3 interbody fusions at L5/S1 and bilateral iliac crest graft site. First was anterior with BAK cages. Second and third were 360 with pedicle screws and rods. Have had chronic back pain for 15 years, but for a long time, was able to manage with injections and meds. (Please see my profile for Medical History including 2010 MRI and CT results).
The last 4 years have been horrendous. The pain has been out of control, and is now also in both hips, both feet, and left thigh. Both SI joints are also an issue due to severe arthritic deterioration. But for about 18 months now, my coccyx has also become a problem. The tailbone pain takes my breath away. Started out of nowhere - no fall or trauma to the area. I cannot sit for more than 20 mins, cannot lean on it at all, have pain during bowel movements (sometimes), cannot clench buttocks. The worst pain, by far is going from sitting to standing. I'm now even getting coccyx pain when I'm just sitting doing nothing.
For the coccydynia in particular, I have tried ESI, cortisone injected all around tailbone, SI rhizotomy (both sides). Currently I take Naproxen, Nucynta, Desipramine and live on about 10 Oxycocet a day. Temporary relief if anything, but pain has literally tripled over last 2 months and has become almost constant. No idea why, but right now, nothing is helping. The only time I was completely pain free was during last round of injections about a month ago while the Marcaine had me frozen. Soon as it wore off, pain came back with a vengeance.
I had a coccyx x-ray that came back normal. I've been told that unless there is a major fracture or tumor, x-ray almost never shows anything - but who knows. PMD thinks it's muscular, but I know what muscle pain feels like and this isn't it. This can't just be nothing. I'm wondering about a micro fracture or possibly whether my tailbone is dislocating when I sit/stand. Needed to have new radiology of lumbar spine anyways, so doc added coccyx to referral. CT was today, and MRI next week.
I have done tons of research on and off this site, but I really want to connect with a person who has dealt with this. I even searched through old posts on SH, and sent private message to the person who posted about this in 2009, never heard back. She may not be an active member any longer.
I will be discussing caudal block and ganglion impar block with PMD tomorrow as possible pain relief for coccyx. Does anyone know anything about these injections? Has anyone had them, with any success.
Obviously I have read about coccygectomy (removal of all or part of coccyx). Does anyone know about this surgery? Is it only performed for a fracture or dislocation - or will they do the surgery for severe coccydinya (with no apparent cause) that doesn't respond to non-surgical treatment for an extended period of time? Also, have heard mixed reviews with regards to recovery - some say, piece of cake, takes a month or two, other say, agonizing and takes close to a year...thoughts??
Please, from the bottom of my heart, any information, or experiences you could share with me would be hugely, hugely appreciated. As I mentioned earlier, I have had chronic pain from FBS for 15 years, so sadly I'm used to it, I understand and for the most part, I know what to expect. This coccyx thing is new, unknown and very scary for me because it is so unpredictable, and frankly, I am shocked at the severity of the pain it causes.
Thanks for listening/readling. I really hope to hear from someone....soon!