Lauren, France - firstname.lastname@example.org
I've been reading this website for more than a year now. My story is so similar to others here, so the first thing I want to say is thank you to Jon and to everyone who has posted here because it has really helped, and ultimately is what led to treatment. Although it is depressing at times to read how long people have suffered, and the mistreatment from medical practitioners, it has helped feeling like I wasn't alone or crazy and helped me keep pursuing a solution. It also encouraged me to start a record of the pain and treatments which helped convince doctors to take it more seriously. I am 36 now (this started when I was 34), 5'7'', 64 kilos.
I have little idea what caused my pain which began three years ago. I used to ride horses once a week as a teenager but had no falls or pain at the time. Just before the pain started I took a three hour flight where I fell asleep with my legs tucked up, the flight was apparently turbulent and I may have bounced on my coccyx, that is the only possible cause I can think of. That was October 2013. The below is a list of how I tried to seek treatment since then, and the doctors I saw, many of whom I found on this website. I'm Australian but live in France, on the Swiss border near Geneva so I have had treatment in all three countries.
December 2013 returned to work (had been on my honeymoon since the plane flight above) in an office job. I felt mild pain when sitting right at the base of my spine, a dull pain all the time when sitting and a sharp pain when moving from sitting to standing or vice versa. No pain while standing.
January 2014 the pain was not getting better with rest and avoiding sitting. I saw my doctor (GP) who prescribed anti-inflammatories three times a day for three weeks. The pain was reduced by the anti-inflammatories, however two weeks into it I found out I was pregnant and had to stop taking them. After a few weeks of discomfort the pain stopped for the entire pregnancy.
September 29, 2014 - I gave birth to my son, a very quick natural birth with no complications. No specific coccyx pain noticed in the few days after giving birth.
November 2014 - The pain had returned, especially as I was sitting a lot to breastfeed every three hours, including during the night. It was a dull ache when sitting and sharp knife like pain when moving between laying/sitting/standing. I didn't take any pain killers or other drugs while breastfeeding.
February 2015 - I went back to work at a desk, sitting long hours. The pain returned fully, especially the sharp pain, and began getting worse. It would start after less time sitting, last longer and the dull ache was stronger.
March 2015 October 2015 The pain was continuing to worsen so I started seeking help. I saw a doctor and was referred to a chiropractor. He thought my pelvis was misaligned so I was sitting badly. He did one adjustment a week for 6 weeks with no difference in pain.
I saw a doctor again and was referred to have an x ray which was done laying down (when I had no pain at the time). It showed no obvious break or damage. I was then recommended to try acupuncture to help ease the ligaments which might be pulling/tightened around the tailbone no relief.
I saw another doctor and asked for a referral to an osteopath, Dr Andres Zurcher, who I found on this site had treated someone successfully (see Doctors and specialists in Switzerland). He stated that if other doctors hadn't been able to help then he didn't think he could but would do three treatments, as the coccyx might be stiff and he would try to get it more mobile. After three treatments with no effect he said we would try three more. He was putting strong pressure on my coccyx which was extremely painful. After the treatments I would be in increased pain for several days to the point of limping. At the eighth treatment he joked that his thumb was sore from putting extreme pressure on my tailbone. After that I stopped going.
November 2015 - I contacted Dr Maigne (see Doctors and specialists in France) and arranged an appointment that I travelled to Paris for. He conducted an external and internal exam and took a dynamic xray which did not show anything obvious until I turned to the side to have a cortisone injection under xray, and a spicule was evident, which is where he put the injection. Dr Maige wrote a report saying that he had viewed a spicule.
The cortisone injection had no effect, after which Dr Maige thought we should further investigate as it should have worked.
January 2016 - CT scan in Geneva. The doctor (GP) who ordered it thought the bone looked normal in density but misshapen. The report said that there was a small lump on the right hand side but no other pathology. He said he could not refer me as none of the 4 osteopathic surgeons he worked with specialized in this.
March 2016 I had to return to Australia, a very painful flight that I stood for most of and used painkillers. I took the chance to try to find help there and had an appointment with Mr Peter Wilde who I found on this website (see Doctors and specialists in Australia). He did a 30 second examination and looked at one xray (not the dynamic xray and not the CT scan) and advised me to wait it out, or I could choose to have surgery since I was not overweight, and so it would be not so big of a risk to have surgery, but it might not fix the problem. I'm sorry to say I found him very dismissive and I left once again disheartened.
March 2016 back in Geneva I had an appointment with Dr Guillaume Racloz at the HUG hospital (who I found myself through a friend who had had an operation at the HUG). Thankfully I found him to be kind, knowledgeable and he made a plan of next steps. He did a full examination, testing hips, legs and back for pain and movement. He thought it likely given that examination that the pain was coming from my coccyx and talked me through possible options (tumour, infection/inflammation, mobility issue, bone deformity/growth). He was also honest enough to say in about 40% of cases the cause for the pain is never known. He ordered an MRI straight away. Once we ruled out the first two (which he thought were unlikely as they would likely have been seen on the CT scan) we would try one targeted injection to confirm the pain was only coming from the coccyx, and then book surgery.
May 2016 the MRI looked normal, ruling out a tumour or infection/inflammation, I was referred to an anesthesiologist who had experience dealing with coccyx pain for a plexus block injection.
June 15, 2016 - Appointment with Dr Davide Zoccatelli. After an examination he recommended to do a lidocaine injection only first, to test if the pain was truly coming from the coccyx (ie just an anesthetic, no painkillers/treatment). Since we would know the outcome of this within a few days I agreed to try this first. He put the lidocaine injection near the second joint of the coccyx this reduced the pain for three hours then it fully returned. This was considered a positive test that the pain is coming from the coccyx, so Dr Zoccatelli recommended a combined lidocaine/cortisone injection next, but in the joint between the bones. I was not sure why we needed to go back to treatments designed for inflammation when the MRI showed none, but it is hard to argue with doctors. Dr Zoccatelli was very nice, but he seemed very against surgery before he got to try everything he could think of. I felt like I was going backwards again.
June 17, 2016 Second injection, of lidocaine and cortisone, between the second and third coccyx joints it reduced the pain for three hours then fully returned. Dr Zoccatelli offered me a choice from here, either have the same as this injection every two days for three injections to see if we could prolong the benefit, or have the plexus block. I had no hope or any evidence to suggest that any relief would come from the cortisone and these injections were painful and just prolonging everything so I asked for the plexus block.
June 27, 2016 - Plexus block (Ganglion Impar Block) an extremely painful injection. Reduced pain for two hours and then returned fully. Dr Zoccatelli referred me to another surgeon at the HUG hospital Geneva, unfortunately Dr Racloz had moved to a new hospital in Neuchβtel (120 km from Geneva).
August 2016 Appointment with Dr Dennis Dominguez at HUG Geneva. Despite being referred he didn't appear to have read my file and asked me why I was there. He asked the background and when I gave him the print out of the above he said to just give him the last year, ignoring the start of the pain and first two years of treatment. He did a quick examination and said it was likely ligaments because of the pregnancy (even though I said the pain started before that). He didn't want to do surgery as in his opinion it is a 50% success rate. He suggested I have a few sessions of physiotherapy to teach me perennial reeducation exercises I could do at home, and come back in three months if that didn't help, or to get another opinion. Once again I left feeling dismissed and depressed.
All this time the pain had been worsening. I was in pain all the time, sitting, standing or laying, but worse when sitting. I no longer had the stabbing pain but had constant throbbing/aching pain in my tailbone, which radiated out by the end of the day to across my lower back and up both sides of my spine.
I used to get some relief from Panadol but took very few as I was breastfeeding my son. By now I got no relief, I have also tried Nurofen and Panadeine with little effect. I used to drink alcohol very rarely (one glass a month), but now a glass of alcohol in the evenings combined with two Panadol is the only thing that helps me to get to sleep for a few hours.
I had been in this pain three years, my whole marriage and all of my son's life. I found it difficult to play with my baby son as I couldn't get down to the floor level without significant pain. My employer thankfully purchased a standing desk so I am mostly able to work, although in work meetings I need to apologize for standing at the back. From a happy positive person, in the last year I would often feel anxious with no explanation, and find that I am emotional when I wouldn't normally have been. We haven't been able to think of having another child with me like this.
September 2016 I contacted Dr Maigne again to ask for help, and let him know the investigations and treatments I'd had since coming to Paris to see him. He referred me to Professor Doursounian, who reviewed my case and answered emails overnight every time. I asked to be booked for the surgery as soon as possible, and Professor Doursounian booked me in for an appointment 29 September and possible surgery 3 October. We immediately made plans to travel to and stay in Paris, took sick leave from work and my husband flew our two year old home to Australia to stay with his grandparents for 5 weeks.
I was so thankful to have a way forward and something to hope for again, although I was scared to hope as I felt like I'd had just about every diagnosis moving too much, too little, pelvis misaligned, ligaments pulling, spicule.
October 3, 2016 I had the operation, all went well and Professor Doursounian reported that the bones were very mobile. Basically the bones and cartilage were rubbing on each other hence the pain. He was surprised this was not more evident in the dynamic xray, but since it was taken a year ago suspected that the condition has worsened since then. It was so good to finally have a diagnosis with evidence, and to know that the surgery was necessary it would have just continued to get worse. Even though I don't speak French, everything was very easy and all the administration staff, nurses and doctors lovely most have some levels of English and Google Translate does the rest! In France they must be clear about the costs before the surgery (you must also pay on check in), Professor Doursounian told me the costs in our initial emails, which was great as I wasn't sure my insurance would cover it.
After the surgery I was on morphine for only the first day and then on tablet painkillers four times a day until I left hospital. Antibiotics on a drip for two days, and anticoagulant injections for three days. I was allowed a shower on day four and the bandage was changed. I was able to lie on my side from the first day but as others say this gets very uncomfortable and you have to keep switching sides. Since I got so much great advice from this website I will offer my own take extra pillows, I especially found a small neck pillow good when I had to lie on my stomach as I could put my face down in it, or on my side I was using this and other normal pillow to put behind my back and between my knees so I was more comfortable and propped up. I took earphones and a good eye mask even in my own room it was noisy and bright trying to have a nap during the day. I took dvds, magazines and a book I only found the book useful as on my side it was too hard to hold/use anything else.
October 11, 2016 I am now 8 days post operation. I spent 4 nights in hospital and am now in an apartment near the hospital for the next two weeks until I am allowed to travel home (we have a single bed mattress strapped in the back of our wagon and more car tie down straps that we got from a hardware store to tie me down for the 7 hours home). I bought a massage table on advice from others on this website, and have laid on it a bit on my stomach but probably didn't need it in the end. I borrowed crutches just for the very very slow walk between the hospital and the apartment, didn't need these either although I think it helped people give me more space and time to cross the roads! I was also loaned a 'toilet seat extender' which goes on top of the toilet bowl to make it a foot higher so you don't have to sit down all the way I found this one very useful.
Professor Doursounian came today and said the wound is mostly healing well, the incision is about 7 cm. There is a small part at the top still open so that means still no walking for me still until Thursday when he returns to take out the stitches. I am in far less pain, only taking two Panadol at night to help sleep, nothing during the day. The pain feels like wound pain (itching now as it heals) but I am still too apprehensive to say the coccyx pain is gone, although Professor Doursounian is very confident I will have a full recovery but reminds me it needs to be slow, three months is likely to be the recovery.
I will update again once home and really hope to tell you that the surgery fixed my pain. Even though I'm still nervous I am at least emotionally feeling like I'm making progress finally, so I feel like there could be light at the end of the tunnel.
Like many others, I would say to those still trying to get help - never give up trying, know that this is hard to diagnose, that you will likely hear lots of conflicting opinions, keep believing that you are making progress while you find a doctor who cares and speaks with experience. If you have any questions or if I can help with advice please email.
Dynamic x-ray with needle
CT scan 1
CT scan 2
CT scan 3
Coccyx Incision day 9
Update 2016-11-20 - 6.5 weeks
I'm really pleased to say that everything is going very well! The journey home was really easy, in fact it felt like a Business Class flight lying down in the back of the station wagon on a mattress surrounded by pillows! Since then I have been resting at home and in very little pain- about 2/10 when I got home and gradually reducing. I stopped taking pain medications within a few days of getting home.
I am now just past the six week mark and started to sit down on Tuesday for a few minutes at a time. I'm able to sit on a dining chair for about 10 minutes, leaning forward on my elbows, and then can feel a little burn so have stopped at that. The burning feeling goes away in a few minutes once I stand up. Otherwise I have no pain. I have been able to make short excursions by laying the front passenger seat of the car right down and laying on my side to be able to go to the grocery shops. I can also pick up my son without any pain when occasionally needed, but still taking it easy.
I am feeling so much better, not only physically but emotionally I am no longer upset, anxious or angry for no reason. The pain I feel now is different from before, it is no longer the stabbing deep pain that radiated out from my tailbone, but more like a muscle sprain as it heals, so I'm very convinced the surgery fixed my problem and I just need to be patient through a little more recovery. I am really looking forward to being 100% better very soon!
It has been 15 months since my operation. I'm really pleased to say it was successful, and I have my life back free from most pain, anxiety and negative effects for my family. Six months post operation I was mostly pain free. By that, I was having 9 out of 10 days with no pain, and if I had a long day of sitting or had to be in a cramped situation like a plane for a few hours, I would get a dull ache that would only ever reach about 2 out of 10 on the pain scale. I could sit at work when I wanted, during meetings, in the car, in buses etc. The pain would never reach a level where it would cause stress or anxiety.
It was expected that the recovery would continue to slowly improve and the pain be totally gone by 12 months, but I was also recovered and well enough to start trying for a second child and one came very quickly! I'm now 8 months pregnant with our second child and have been able to carry the baby, sit and not have pain other than long flights or sitting for long periods which is uncomfortable but certainly bearable and I hardly notice it anymore.
I'm very excited to have the baby and be back to my normal happy self for my family. Also glad to report here that surgery was absolutely the right decision, I'm so glad I persevered with trying to get help. I wish courage to everyone who is still suffering, I hope this can assist.