Anonymous, the Netherlands
Hi everyone. I have been suffering coccyx related issues for nearly 9 years so far. It all began since I was approximately 13 years old when I noticed that part of my tailbone/coccyx was protruding through my skin (which was itching at that moment and the skin surrounding the protruding area was red and irritated when it just started).
Up until now I am still not clear what has caused my coccyx to be protruding/dislocated, but the best assumption I can make is that I fell on it as a child and it became dislocated without me immediately noticing it.
Back when I was 13 and all this hell just started for me I did not suffer any back or nerve problems whatsoever. It has only been a coccyx that appeared to be longer than normal and dislocated slightly to the right side. I would have no problem when sitting straight, but once I leaned a bit backwards (to lounge in a chair for instance) the bone would hit the surface of the chair and I could feel as if I was sitting on a golf ball all the time. As I could feel and even see the protruding coccyx through my skin, I went to the GP to have it checked, but he told me that it wasn't anything serious or to worry about and that I should simply try to learn and live with it.
So I did, and got used to the feeling of sitting on a hard piece of bone for years.
Unfortunately, as the coccyx bone is quite flexible, it was slowly pushed inwards as I have no choice but to sit on it or lay on it while sleeping which would put a lot of pressure on the bone. The bone itself doesn't hurt when I touch it or sit down, it just felt uncomfortable back then. Once the protruding coccyx started to get pushed inwards, my sitting posture adjusted to these changes and I started to notice slight stiffness within my lower back due to my inability to sit like a normal person who doesn't have a too long coccyx.
Having been to the doctor multiple times once again, I was once again not taken seriously and referred to a physiotherapist whom could help me with loosing up the stiffness in my lower back. However, since the cause/origin of my back problems wasn't treated, my back would become stiff again within 3-4 days after physiotherapy treatment (since sitting would cause my back to become stiff again). And so I have been to at least 50 physiotherapist treatments, and even found chiropractors which wouldn't get refunded by insurance. The chiropractor could relieve my back pain/stiffness, but as the same old story goes again, after each treatment my stiffness would once again return after 3 days.
Therefore I've also had MRI scans, X-rays, CT scans which would only show a slightly dislocated or long coccyx bone and nothing else. Therefore, doctors would once again ignore my story and problems and simply tell me that I am healthy and shouldn't worry about it and send me back home again. (Note that for each x-ray, MRI, CT-scan or appointment with orthopedic surgeons, etc. took at least a few months waiting time in between every single time).
Orthopedic surgeons in the Netherlands would just simply tell me to "sit up straight" ignoring my coccyx problem and refused to even consider surgery for me.
As time passed by and my coccyx started to move inwards even further, my lower back stiffness increased every single day/month/year up until a point that a physiotherapist could not even loosen my stiff back anymore and would occasionally start treating my now stiff neck only (which would become stiff once again after few days of my visit).
I have simply accepted to live with my stiff back, but what has been so frustrating is that there is no point where it all stops. Due to my dislocated coccyx being left untreated I can simply not sit in a healthy position anymore and my back problems are increasing every single day. I have been to numerous doctors/orthopedic surgeons/physiotherapists/chiropractors/manual therapists/posture therapists/anything you could think of within the Netherlands without anyone providing me significant help or even referring me to any surgeon who is willing to perform surgery on me. It seems like I am the only person who finds it logical that my coccyx should be removed or at least be manipulated through surgery since it is dislocated.
Every single doctor would ignore the to me logical connection of the coccyx with my stiff back while it is so clear to me that all my problems right now are connected to a poor sitting posture (which is once again connected to my coccyx..).
I've been depressed so many times and there would be days that I don't feel like eating or doing anything whenever I felt something was changing once again with my coccyx, and causing even more symptoms.
Upon my own effort I've spend days and nights researching the internet and found a coccyx specialist (dr. Jean-Yves Maigne, see Doctors and specialists in France) and got my hopes up again and made an appointment with him. I visited Paris, France in 2011 to have my coccyx checked by Dr. Maigne who provided sitting/standing x-rays, as well as an injection to see if there is any inflammation. Inflammation wasn't the case, and the sitting standing x-rays showed that my coccyx was abnormally long and hitting the chair when I am sitting.
However, Dr. Maigne told me that my coccyx issue was very rare to him and did not have any treatment for me and send me back home left untreated. He also refused to refer me for surgery since he thought it wasn't necessary for me and wouldn't fix any of my problems.
So back in the Netherlands I tried to accept it and move on with my life again. I did this for a few months until I started to feel change again as my coccyx was being pushed even further inwards due to sitting and my back became even more stiff, as well as my neck, and things just didn't feel normal anymore around my hips area. I could also sometimes feel pain in one side of my legs after sitting for too long. So I searched for coccyx specialists within the Netherlands whom are able to do this type of surgery (found them through this website), and made an appointment with them which took 3 months.
After the first appointment, I was once again sent home because the doctors always ask me if the tailbone itself hurts when they hold/touch it. And the bone doesn't hurt for me, so therefore they would automatically ignore the surgery option. Coccyx surgery in the Netherlands is often only performed on those who cannot even sit down or lay down on their back anymore because their coccyx would hurt so much when touching it, and this wasn't the case for me.
However, that still doesn't take away the fact that my tailbone is dislocated, and this has never been taken seriously as they would always tell me that the coccyx is merely a small piece of bone, and my back problems would impossibly have any connection with this bone. And for my back problems, they would just leave me to fate.
I then made another appointment with another specialist at the same hospital for a second opinion, which would go 3 months further into time again. And this appointment has been, by far the most disappointing one I've ever had in my life. The doctor was arguing with me that I should just accept it the way it is since I've been to so many doctors and they all tell me the same story. When asking this doctor whether my coccyx in his opinion is exactly the same as any other normal person, he simply told me "yes", regardless of all the MRI scans/sitting, standing X-rays from Dr. Maigne which showed that my coccyx is abnormally long and dislocated to the right.
You can tell how frustrated I was, building up so much hope and patience for an appointment with a doctor who simply tells you there is nothing wrong with me, while I've been suffering through so much pain for years. He simply assumed there was something wrong with my head. But if I were as normal as any other person, I wouldn't be spending so much time and money on desperately seeking help from doctors.
I then again tried to accept it the way it is since it became impossible for me to find any surgeon who would help me, as my GP also told me "according to the medical world in the Netherlands, there is nothing the Netherlands can do for you, so just accept it and learn to live with it".
Therefore I've kept quiet for a long time and did as I was told while occasionally visiting physiotherapists who couldn't improve my state of health anyway, but it was better than nothing.
Things started to get even worse when even parts of my sacrum is being pushed inwards due to sitting (my coccyx is entirely curled up inside at the moment, and the sacrum would just follow as well as parts of my lower back). I then began to feel numbness in my legs while sitting for a long time, and this would go away if I stood up again.
I did countless of visits to the physiotherapist again as would be the only person willing to talk about my problem, but he also admitted that he couldn't do anything else for me as he wasn't a surgeon, but he could also see that my mobility is continuously deteriorating.
I have recently been to another clinic within the Netherlands to have a thorough check up there, but they are not surgeons and simply specialize in giving exercises that could help people off their back pain, and kept telling me to ignore my coccyx issue and the thought of that my problems have any relation with my tailbone if I want to get treated by them. They somehow gave me the feeling that I should visit a psychologist.
Therefore I am now aware that there really is no doctor in the Netherlands that could do anything for me and it frustrates me because it isn't like coccyx removal is not possible. Especially for me as I am still young (22) at the moment, and could be a good candidate for surgery rather than if I wait until I am 30 or 40 when it may be too late for surgery as I would have a lot of other complications by then. All doctors simply don't want to perform surgery on me because they assume that it is not necessary, regardless of how badly I am praying each day to one day find surgery.
However, I also have a difficult time sleeping as any position for sleeping would cause numbness in my arms, legs, or hands and therefore I have to switch positions multiple times each night. The numbness in my legs is also very irritating, especially after a 12 hour flight I don't feel like doing anything other than laying on my stomach for a long time to relieve the nerve pain.
At this moment I am almost convinced that if I do not find surgery to remove, or at least manipulate my coccyx (which has been pushed inwards unnaturally), it may become very difficult for me by the time I reach the age of 25 or 30 to still get any help. I am afraid that I will get a hernia anytime soon, and I still wish to be able to normally have an office job in the near future without having to worry every single minute of my legs becoming paralyzed.
Thank you for reading, if you have any recommendations to surgeons willing to help, please do let me know. I am willing to travel anywhere if there is a high probability that I do get effective treatment rather than being sent home in the end without any help.
Back in 2014 I wrote this post as I was in a very depressive state due to my chronic coccyx problem. I am still suffering from it and it bothers me a lot. But thanks to your website publishing my post, somebody contacted me a while back who had similar issues and referred me to Mr. Meine Veldman (see Doctors and specialists in The Netherlands). She told me that she did not have any expectations either when going there but that this manual therapist suprisingly fixed her problem (not conpletely, but surely for a big part) in a matter of seconds. As I've been visiting hospitals/doctors in many different countries for 10 years already with getting dissapointed every single time I was rather skeptical about it, but decided to give it a shot anyway.
Mr. Meine Veldman has surprised me as well as he is literally the first person who is actually knowledgeable with my symptoms and agrees to what I am saying (unlike most other doctors who seem ignorant). He noticed that my coccyx was dislocated and pointing more towards one particular side. Although he did not fix my problems completely, he managed to do something and within just two minutes my dislocated tailbone was corrected again! I was astonished as my pain and such was reduced by A LOT and I felt like a human being again. I heard that most people who visit him would be normal again after one or maximum two visits. However, I believe that my problem is a bit more extreme so unfortunately my coccyx does move inside slowly after a couple of days post treatment. I've visited him twice thus far, and it seems that it now dislocated once again. But at least he corrected the 'severely dislocated' issue from my coccyx and it is now positioned in the middle (natural position). And now I have an address I could go back to whenever I think it starts to become too dislocated, so I am very thankful for that. It still bothers me a lot in many various ways, but at least now it has become more bearable by FAR because before I visited Mr. Meine Veldman you would probably think I am crazy/going insane once I try to explain my symptoms. It was hell.