Josh, USA - firstname.lastname@example.org
I have had idiopathic coccydynia for over a year now. Imaging studies are not obvious, though I have some inflammation present on the MRI scan. This is not surprising and I have had many diagnosis from both chiropractors and doctors. All are different. Many doctors are admittedly clueless and many chiropractors are overconfident in their ability to help.
I have had physical therapy at Charles King (see Doctors and specialists in the USA, California). No response. I have also had no response after numerous visits with the following chiropractors: Steven Becker, Zail Khalsa, Alan Nunez (see Doctors and specialists in the USA, California). Michael Durtnall (see Doctors and specialists in the UK, London). I'm done being "holistic" and "natural." I have a cortizone injection with Ty Thaiyananthan (see Doctors and specialists in the USA, California) tomorrow. Will keep everyone posted.
It has been about 2 years since I last posted and I'd like to provide updates. I have been through the gamut of treatments and doctors and theories so hopefully, this post can help at least one person.
The distinguishing trait to my pain is that there are no OBVIOUS abnormalities in my tailbone. None on MRIs, x-rays, CTs, Bone Scans, or according to the expert opinions of Dr. Maigne (see Doctors and specialists in France) and Dr. Foye (see Doctors and specialists in the USA, New Jersey). They both have theories, but they are inconclusive theories and they are not in agreement.
A quick note on the doctors in my first post. As you can see the majority of them are chiropractors. I have now seen over 7 chiros and have done some extensive research on them. I now firmly believe there is no reason to see a chiro for coccygeal pain. There is no evidence to say that they offer effective treatment for this condition. If someone gets better from seeing one, that is great, but that is an outlier and could be due to a variety of reasons not related to the chiro work, rather than a predictor of good outcomes with chiro work. Michael Durtnall, in particular, gets a lot of good reviews. It is rather peculiar because almost everyone in the coccyx facebook group who saw him didn't get better and a few got worse. It costs a lot of money to go see him from out of the country and something is fishy about all his positive reviews. In general, if something seems too good to be true, it probably is.
At the end of my last post, I mentioned Dr. Ty. Dr. Ty diagnosed me with a hypermobile coccyx without actually touching it. This should have been a red flag to me, but I was naive at the time. You cannot diagnose a hypermobile coccyx without palpating and/or having sit/stand x-rays done. All he did was look at the MRI. My coccyx is rather stiff so this was an incorrect diagnosis. If your doc doesn't touch your tailbone when he evaluates you, run away. I went ahead with an injection with Dr. Ty, which was ineffective. He wanted to do surgery but that's when I realized he wasn't the doctor for me and bailed.
Next, I flew to Paris to see Dr. Maigne. He did a thorough evaluation and diagnosed me with a rigid coccyx. I had an injection with him which also did not work. The failure of the injection left him scratching his head a bit. He, unfortunately, didn't have any solid recommendations for me after that.
Next, I saw Dr. Patrick Foye in New Jersey. He did an extremely thorough eval (more than Maigne) and spent half the day with me. I love the care he takes with his patients. He also has a ton of respect for Maigne - they are both really top-notch. The x-rays I took at his facility were normal. He had some theories about the tip having a slight spur in the form of thickening but wasn't convinced. He did a nerve block/cortisone injection combo platter. It did not work. He isn't sure what to do now, since I have not responded to any injections. I still highly recommend him. The only downside is his office is a royal pain in the ass when it comes to getting your images and billing. I was having phone calls with them every week for 6 months after.
After that I started looking into a benign tumor I have on the top coccyx bone (my pain is at the distal tip, a different area). I wanted to know if the pain could be related to this tumor at all. Foye and Maigne said no but I decided to investigate further since they didn't have answers for me. I saw some top musculoskeletal oncologists here in LA. We did some testing and found out I have a benign notochordal hemartoma. A relatively common spine tumor. My oncologists don't believe this tumor is related to my pain.
During this time, I was exploring surgery with a couple of surgeons in my area: Dr. Hyun Bae and Dr. Rudolph Schrot(see Doctors and specialists in the USA, California). They both seem like solid surgeons. Bae tries the subperiosteal approach, which I like. Schrot has a ton of experience, which is also important. Bae wasn't sure what was causing my pain. Schrot seemed to think my tailbone was too long. At this point, I had had over 20 different diagnoses, so I was becoming pretty jaded on the whole "I need to understand why" question. I had no thoughts on Schrot's diagnosis.
While exploring surgery, I also started speaking with a physio about some cool Pain Science stuff coming out of Australia. A lot of work being done at the University of South Australia by a researcher name Lorimer Moseley. To summarize, new studies are finding that in many cases of chronic pain, the pain is not a reflection of tissue damage. The link between tissue damage and pain is weak at best and what really gets pain stuck are patients interpretations and mental and behavioral amplifications of their pain. To learn more, type in Moseley name into google. This Pain Science has helped me more than any physical treatment to date. I no longer view my pain as a "threat" or a signal that I'm "messed up" in that area. I now just see it as pain. This has allowed me to function much better than before. I sit and lay as I want (mostly), and even though I still have pain, it is often manageable.
So, I have put off surgery for now. I would like to avoid completely, if possible. But I'm not ruling it out. I'm heading to grad school in the Fall so a lot will be determined then. I function quite well but at the same time I am still in pain and my hope is that that will diminish even more over time with my dedication to the mental and behavioral strategies outlined by the pain science community.
If you have any questions or would like to know more, shoot me an email.