4 years of pain and some specialists to consider for Norwegians

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!

Update, 2010-11-07

During the spring this year (2010) I wanted to try for a last time to do something that not involved surgery. So I went to the Sayers Clinic and chiropractor Michael Durtnall in London. Durtnall seemed to be well experienced with tailbone pain and after what I have read on this site, he has also helped a lot of people. He told me that my tailbone pain probably came from an accident many years ago and that my tailbones second disc was more and more fusing together with the lower part of the sacrum. Resulting in that the tailbone got a strange angle between my first and second disc, because the second disc was not moving that well when sitting. This diagnose seemed reasonable and I tried out Durtnall's manual treatment for this three times. Sadly, I did not get any good response from the treatment, and considering that I had to go back and forth to London for each treatment I decided to stop.

I then decided to schedule for surgery. During the spring I had also found a surgeon in Norway (while randomly searching Google) that both had experience with and belief in coccygectomies. His name is Rainer Knobloch and works at the St.Olavs Hospital in Trondheim, Norway (see Doctors and specialists in Norway). He has been giving me a lot of help and a great service before and after the surgery. He is the first surgeon in Norway I have talked to that have taken my problems really seriously.

I had my surgery at 1 September 2010. I spent one night at the hospital and flew back to Oslo the day after (just a 45 min flight). The first week I had some pain killers (Voltaren + Pinex Forte) and I was very careful with walking and moving a lot around. I felt better and better each day and after two weeks I removed the stitches. At this time I could walk around for hours without pain, feeling better and better for each day. I did not try to sit before one week after I removed the stitches, three weeks after the surgery. I started out sitting for 15 mins the first day, 30 mins day two, 1 hour day three, 2 hours day four, and so on. I didn't feel any pain at all and I really believe that all my problems now were gone. I was so happy! But then suddenly after been "test sitting" some hours each day for a week, I suddenly got some really heavy pain. A lot of the same pain as before. An aching pain while sitting, but the pain was now not directly in the coccyx area, but a bit further out in the pelvic muscles.

Now, its 2 months after the surgery, and I am sad to say, that I still have more pain than before the surgery. I have not returned to work and I am doing a lot of exercises and going to a physiotherapist for trying to be better. It seems like the muscles and the ligaments in my pelvis are really sore and not completely healed. I can approximately sit for 30 mins each day without getting to much pain. But the old, original pain and the pain from the scar seems to be gone, so I have some believe in that the soreness in my pelvic muscles will go away over time.

I still think surgery was the right decision for me, because of having tried all kinds of other treatments during the last five years. But I must admit that I now 2 months after surgery I don't have the results that I had hoped for. But considering what I have read at this site and that the surgeon also told me, the recovery for this surgery varies a lot and might take several months or years to complete.

If any other people from Norway are considering removing their tailbone, I would highly recommend Rainer Knobloch at St.Olavs Hospital, and feel free to contact me for advices or more experiences.

If people have experienced the same kind of problems as me after the surgery, with really sore and aching pelvic muscles and ligaments, I would love to receive advice on what I can do to feel better and speed up recovery!

Update, 2011-03-13

It has now been 6 months after the surgery and I still have the same pain pattern and level as 4 months ago. I cannot sit more than half an hour each day in average. The pain charges up over days, so if I prevent sitting for a week, then the first two or three days after this, I can sit for like 2 or 3 hours. Its really difficult to decide if the pain is the same as before the surgery, but its more spread and feels a bit more wounding and aching than before. The pain is situated above and around the coccyx area.

I don't know what to do because I don't know what my medical condition really is. I see three options:

1) Still pain from the recovery process and the wound (the muscles and ligaments need to adopt to the new situation)

2) Phantom pain (the nerve system still think the coccyx is there and sends pain signals)

3) The coccyx was not the source for my pain (wrong diagnosis) and the original pain source is still there (ligament, nerve entrapment, muscle pain,...)

Of course I hope that I am still in situation 1). I have high levels of pain in the attachments of the gluteus maximus muscles around and above the coccyx area and also a bit pain outwards in the pelvic/gluteal. I have been to several physiotherapists that have worked with my pelvic muscles (massage, trigger point treatment, TENS, shock wave treatment, stretching, exercises strengthening the pelvic muscles). They say my pelvic muscles are quite tense and tight and having a few muscle knots. Since its now over 6 months since the surgery and I still have no decreased pain or any progress I am starting to loose faith.

The good thing is that I can do all kind of training and physical exercise, I am going to the gym, skiing or running almost every day, no pain at all. My physical condition (except my pelvic of course) is better than ever. Pain only occurs when sitting or lying on my back, giving pressure on the area.

Therefore I am wondering if anyone has experienced this aching kind of pain in the muscles (maybe also ligaments) around the surgery area? And does anyone have any advices on treatments, exercises or anything to make it get better?

Update, 2013-03-17

Wrong diagnosis all the time, tight and tense muscles was the problem.

Its about 2,5 years since my coccygectomy. As I have written earlier, this didn't change my pain or pain pattern at all.

About 8 months after the surgery I went (as almost a last solution) to a special kind of physical therapist, called "psykomotorisk fysioterapeut" here in Norway, that focuses on muscle tightness and tenses.

She examined me and found out that my entire body and almost every little muscle of mine were far to tense and tight. This was not only a a coccyx-area problem, all my muscles had the same "pain potential", but because the coccyx-area muscles are the one that get provoked while sitting, this was where the pain showed.

All this was caused by unconscious tightening of muscles and also an almost unconscious kind of stress. She started a long term learning program with me to learn how to relax muscles and avoid unnecessary stress. I also started to focus on my breath, starting to breath deep and continue to breath deep and calm in all kind of situations.

It took several months, almost a year, suddenly I started to feel improvements. I went from 0% work, to 50% work, and then started working 70%, 80% and now I have worked 100% for over 3 months.

I still have periods with a bit more pain, but then I feel and understand that this is because I stress, forget to breath and tighten my muscles in general, and I need to calm down and relax, then it gets better.

So many years I wasted time and had so much pain, thinking that this was a coccyx problem. Now I am just glad that I have almost no pain anymore, but of course I am a bit angry that I "lost" so many years of my life. So, my message to you all. Try to attack your problems from different angles, I was stuck in believing that this was caused by some physical damage on my tailbone.

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