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Carl from Oslo - coccyxnorway@gmail.com
Posted 2010-01-10
I am a 29 years old man living in Oslo, Norway. My story started back in 2005, actually exactly the 20th of December 2005. I attended a work-related seminar and was sitting on some very hard and uncomfortable chairs for over nine hours. During these hours this pain suddenly came to me and has been there unchanged and constantly ever since, no fall or trauma involved. The pain is located in the coccygeal area, with a bilateral radiation to the buttocks (sacrotuberal and sacrococcygeal ligaments) and is felt in the sitting position or when giving pressure to the area. There is no pain when passing from sitting to standing up. The pain is centered at the outer discs of the coccyx and I can locate it and trigger it by pushing on my coccyx. The pain kind of charges up when I sit and therefore my pain problem becomes a direct function of how much I sit over time. Therefore I of course try to reduce the amount of time sitting and during a normal work week I just sit some hours on work each day with a cushion (rest of the work time I stand and on the spare time I try to not sit at all). This of course reduces my life quality extremely and I also have big difficulties with handling my work situation, although I now work full time.
I really appreciate all the information I have got on this page so I now decided to give something back. I will now briefly sum up what kind of treatments I have tried and some of the specialist in Norway that I have been to. If anyone in Norway have serious problems with their coccyx and coccyx pain, feel free to contact my for guidance and maybe some help related to where to find specialists. Norway is a small country with a small population so the biggest problem here is that there are actually no real specialists on coccyx pain. The health system is organized as large public units and hospitals and are therefore not very transparent or specialized. And maybe the worst is that none of the doctors I have had really don't seem to care about my problem and many of the more experienced specialized hospital doctors I have visited don't believe in my pain and have all acted quite arrogant. You have to find all the information about your problems and about relevant specialist yourself and it takes a lot of time and effort to try to find people that are actually willing to look into the problem. Its also a big problem that doctors at the hospitals in Norway don't really want to learn from the specialists abroad that are working on new research and methods regarding coccyx pain and treatment. I guess, as you all might have experienced, that coccyx treatment and research are not very prioritized or recognized in the world of medicine. But here is still a list of the doctors, physicians and specialists I have been to in Norway (and that have taken my problem seriously), what they have treated me with and when they did it.
Injections (mainly containing cortisone and anesthesia):
-Injection into the nervus coccyx on each side of the lower part of the sacrum, by Leif Måve, NIMI, Oslo, 2006
-Injection in between the coccyx and sacrum, by Leif Måve, NIMI, Oslo, 2006
-Several injections directly into the tip of the tailbone in the most painful area, Kurt Andreassen, OMI-Klinikken, Oslo, Norway, 2006
-Injections into the lower part of the back, Tore Hind Fagerlund, Smerte-medisinsk institutt, Oslo Norway
-Injections of botox into the muscles in the sacrum area, Marina Manske, Nevrologisk avdeling Ullevål, Oslo
-Injections into the lower coccyx disc, Jean Yves Maigne, Hôtel-Dieu Hospital, 75004 Paris, France
Other treatments:
-Manipulations/tractions of the sacrotuberal and sacrococcygal ligaments and the coccyx, Peter Døving og Jan Løken, NIMI, Oslo, Norway, 2006
-Shock wave treatment directly against the coccyx, Kurt Andreassen, OMI-Klinikken, Oslo, Norway, 2006
-Trigger point treatment against sacrococcygeal ligaments, Peter Døving og Jan Løken, NIMI, Oslo, Norway, 2006
-Rectal massage and relaxation of the muscles in the sacrum, Hilde Robinson, Hans & Olaf fysioterapi , Oslo, Norway, 2007
As you can see I went to Jean Yves-Maigne in Paris autumn 2009 because I have read many of his articles and because he is told to be one of the most experienced in Europe with coccygodynia. "Sadly", he did not find any hypermobility or dislocation when taking and analyzing the dynamic sitting x-ray of me. He located my pain to the lower coccygeal disc and gave me a coccygeal discography and therapeutic injection into the lower disc, but could not say anything about the cause of my pain. Maigne was very service minded and helpful, but the injection did not give me any pain relief and I am sorry to say that he didn't have any other suggestions for me for further treatments. So now I really don't now what to do, when one of the most experienced specialist in Europe cant help me I have now started to seriously look into removing the coccyx, in other words having a coccygectomy. The problem about an operation is that I have talked to a lot of surgeons in Norway and their opinions about the risks of an operation varies from none to very high. If anyone have any suggestions or experiences that is relevant for me, please contact me!