Mo, UK - firstname.lastname@example.org
1. Coccyx pain and tangible spike on coccyx for at least three years, likely much longer before it became very painful. Acute sharp pain as well as dull aching pains.
2. A GP suggests stress as the cause of my pain. Time for a new GP.
3. Saw osteopath for external coccyx manipulation for a few months.
4. Saw spine specialist consultant and was scared off both injections and surgery for 2 years.
5. Finally saw pain specialist (not coccydinia specialist!) for cortisone injections into muscle and scar tissue surrounding coccyx. About six injections total spaced 2 to 3 weeks apart.
6. Found coccyx.org and identified a new (to me) local London consultant familiar with coccydinia.
7. New consultant, Mr. Hardy, identifies problem in MRI and exam, schedules coccygectomy during first consultation (for a few months later).
8. Coccygectomy very successful ! Recommend Mr. Hardy. Healing well. Comfortable enough after one week post surgery.
Now the fun narrative. I spared you no details. Enjoy!
In late 2012 I started having acute coccyx pain, both dull pain and occasional sharp pain upon sitting. I could feel a lump on my tailbone, directly across from a sacral dimple that I have always had. Touching the area, and even laying on it in bed, let alone sitting on it, was exquisitely painful. I fly frequently overseas for work, so long flights were not pleasant and nothing I could do would help. My best painless position was standing. Sometimes it felt like the coccyx bump actually was getting stuck on muscles or something and pinching until I jiggled it loose. (Made sense why, when a doc showed me the MRI later.)
I saw a GP who suggested stress was the cause of the pain, since I was having trouble sleeping. I explained again that the pain on my backside was causing me not to sleep not the other way around! (I switched GPs immediately, by the way and never saw her again. To me this was akin to saying "your severe, acute physical pain comes from your head.")
I thought about seeing someone like a chiropractor, and ended up seeing an osteopath privately. She did a lot of what seemed like leg raises and putting her hand on my coccyx, while chatting with me about her family and vacations. Over time the acute sharp pain decreased, as did the pain upon touch of the area, but I feel convinced that this was a function of time and nothing else. I stopped seeing her after about 5 sessions every two weeks.
Because the dull pain wasn't tolerable at all and the sharp pains were still happening regularly, I used the Internet to locate a "spine specialist surgeon" and ended up with Mr. Lucas at London Bridge Hospital (private orthopedic surgeon). He ordered an MRI. Upon examination he was so rough with my tailbone - which I had definitely told him was very tender - that I involuntarily burst into tears from the pain inflicted. He continued to manipulate it roughly. I asked him about surgery to remove it (desperate!). He suggested that surgery for removal would be premature since I hadn't yet tried cortisone injections for the pain.
**This is important to recall, as you read onwards**: He also said that surgery "should always be avoided in this area, because it would leave me with a giant, lightning bolt shaped scar up my backside; because infection in the area of the surgery was nearly unavoidable because of its location; and because I was too young for this surgery." I was 30 years old.
Looking at the MRI myself, I could see the spike on my tailbone from the side, sticking into my backside, just like it felt!! There was no normal pinged tailbone end at all. I had a blunted anvil shaped tailbone, with a "spicule" (a word I learned on this website, years later.) He was unconcerned by my coccyx anatomy and did not remark on it whatsoever. Needless to say, I left that examination feeling totally hopeless. There was absolutely NO way that "specialist" practitioner was going to go anywhere near my painful area with needles or anything else for that matter, especially considering the very rough handling and lack of sympathetic bedside manner.
Over the next three years, I basically adapted my lifestyle to the pain. I leaned forward in my chairs to take pressure off. (The wedge and the donut coccyx pillows that the osteopath suggested I buy made the pain worse because of the way they pushed on my muscles against the spike part of my tailbone.)
For those of you still suffering, I found that putting a thick lumbar support pillow behind my back helped me lean forward without stressing my lower back, and helped me reach the floor in my office chair (I'm a 5'1" short woman). I also used a footstool everywhere to ensure I could also reach the floor even in airplanes which helped with the angles and relieved a little coccyx pressure. I took a lot of ibuprofen! Sit-ups were impossible and so was Pilates because of the way you roll on your butt or sit in a V. So..Hello chubby tummy!
After a couple years of dealing with it all, I started requesting the seats in planes that can lay down due to medical justification (provided to boss), to avoid sitting that long. Needless to say, the cost of flying for work increased for me, and my boss suggested I scale back on doing my job. This was a horrifying idea.
Because of that I asked my new GP to suggest a new spine doc (trying one more time...). She recommended a pain specialist instead who does cortisone injections.
With that doc, who has nice bedside manner and a sympathetic nature, I received a new MRI and pelvic X-ray. I then had about six total cortisone injections over time, into the scar tissue that had developed and the muscle around my coccyx area - injections, sometimes without local anesthesia - every two to three weeks. It did help with the sharp pains, the doc suggested because it brought down the inflammation in my mysteriously present scar tissue. By the way, injections cause bruising for two days at the site, sometimes making it worse before its better. That is probably normal. The doc let me know eventually that we needed to taper off cortisone because they couldn't go on forever. She really did not think surgery was going to help me, and said that I should not have surgery (again, another doc who didn't remark on the strange spike and anatomy in my MRI). I thanked her, but told her I thought I'd probably end up having surgery one day because her suggestion of continuing to carry pillows and footstools all over the place with me and just suffering through the pain sounded like a pretty sad prospect for an active 33 year old woman!!
So...hopeless again with ongoing pain. A very active woman, I was facing life as a somewhat disabled person.
Finally. About three years from the massive acute pain episodes in 2012/3, I found coccyx.org. I considered having another consult with a doctor mentioned on the website. I then found Mr. Hardy's name and read a couple patients' stories (see Doctors and specialists in the UK, London and Avon). It sounded encouraging that he didn't think it necessary to cut through muscles and tendons. I called his office and within two days had a consultation. He looked at my MRIs and said the cortisone injections would have done nothing because it was essentially pain caused from a misshapen spiked tailbone. Exactly. Also, the prior consultant doing the injections was not putting the shots into the joint space, like you're supposed to if you're treating arthritic joints (as are frequently the cause of coccydinia). Wow! He explained that the spike was strumming my muscles as I sat down and stood up, which is exactly what it felt like and why it was getting stuck sometimes.
***He said it was absolutely untrue that I would have a huge lightning bolt shaped scar. And he said that infection was, indeed, avoidable.*** this is in direct contrast to my consultation with the London Bridge Hospital consultant three years prior! Mr. Hardy explained that the way he does the procedure, it isn't necessary to cut through the muscles or tendons, so the surgery is much less traumatic for the patient. He said it is like splitting open a snow pea and removing each of the peas inside. (Isn't that a nice way to visualize a bloody procedure?)
Surgery: as instructed, two days prior, washed whole body with chlorhexidine 4% body wash (brand: hibiscrub, I think). Day of surgery, intake at 7 am. Prep. Surgery 9 am. Back in day room by 11:30 am. Continued bleeding for the day. Asleep most of day on side. Pretty full of anesthesia and almost passed out when used toilet around 2 pm. Mr. Hardy checked me out at 5 pm and around that time I tried walking again, used toilet, it was fine. Stayed in room until 7 pm. Friend watched me all day, and nurses were checking on me too. Laid down in cab to get home (with a friend to watch out for me).
Ibuprofen and paracetamol big doses during day like clockwork pretty much did the trick with some minor pain still coming through. Sleeping was a little hard so a half dose of the prescribed codeine tabs helped me with pain and getting to sleep. My friend hanged the first post-surgery bandage for me, which was bloody, and without touching the area at all or cleaning it even, she replaced it with a new medipore bandage that the nurses had given me. She did this routine just as instructed by Hardy daily for me (my god,that's a good friend) each day after I showered myself, for six days. She never touched the area or did any cleaning of it and we essentially both just left it alone. I did not lay on my back, so sometimes my hips got very sore from being laid on. When I went to the toilet, I leaned forward onto a chair to avoid infection (and definitely to avoid asking my friend to help me with that!) and did not fully sit on the toilet seat. It was fine.
Days two and three post op were kinda awful. I slept a lot and hadn't had a BM since the morning of the surgery... but the bleeding had totally stopped. I showered daily from that time onwards, using the same chlorhexidine wash and being gentle on the area with a loofah. Next couple of days some impressive black bruising showed up, but it was easier to stand up and walk around. My friend stayed with me for 6 days post op. No infection at all, and the wound healed rapidly. I kept using the chlorhexidine wash every day instead of regular body wash. I really think this helped me avoid infection. I went on a few short walks around the block during the first week but no sitting on my bum at all.
By the 7 day mark I was pretty mobile and took the bus - standing for 45 min - to my appointment with Mr. Hardy. He took out my stitches and said it looked great! Healing very well. He showed me a picture of my coccyx that he had taken after removal (because I wanted to see it). Turns out once he got into the area he found that it was indeed arthritic in addition to being deformed. No wonder it was painful.
After stitches were out, he asked me to try sitting fully for the first time on a normal chair while he observed me. It was remarkably OK! I could feel the bruising on the area and a little pulling on the incision (presumably from my butt cheeks pulling apart). .. But the normal sitting pain I had been so used to was gone. The scar is probably 2.5 inches long but really inconspicuous so far.
I'm pretty happy, and impressed with Mr. Hardy at Lister Hospital in Chelsea, London. I highly recommend seeing him for a consult. I'll post updates after my five week checkup to let you know how I am getting on further down the line too.
About two years ago, I had surgery to remove my weirdly shaped coccyx, which was causing me serious debilitating pain. Surgery is always going to be a journey, but I'm happy to report that I still stand by this decision as the best one for me and helps me live a very normal life! I recovered quickly, and after alternating post-surgery for several months between sit/stand at work, I was able to sit for many hours comfortably.
I have even flown on many long-haul flights. I do all my gym classes again (including high impact ones, and floor exercises in pilates and yoga) with very little discomfort.
Here are the realities of life without a coccyx.
Exercising: I find that there is a little muscle which gets a bit tighter than other areas after exercise, somewhere in the glutes area - probably attached to the sacral tissues in the location of the surgery. It's easy enough to stretch it out, and I'm sure if I saw a physical therapist I would have an even better outcome. It's been on my list... but haven't done it yet. That tells you how minor the pain is.
Regular life: I become conscious of the tailbone area when I'm extremely sleep deprived and generally aching all over my body too (happens sometimes with international travel causing massive jet lag, or have the flu, stuff like that). I do get some mild soreness if I'm sitting in a chair for a long time that doesn't fit me well or causes bad posture. I'm a short person, so that's easy to do. Getting a chair that fits me in terms of seat depth (so my back is all the way against the seat-back, or use pillows there in a deeper chair) and ensuring my feet are firmly on the floor (or a stool) helps prevent any of that mild soreness later.
Scar: It is not visible. The incision was done artfully and is hidden.
Recommendations: the week before your surgery, use Chlorhexidine 4% body wash (I think the brand was Hibiclens) to stave off infection, in place of your regular soap. My doctor said he also bathed in this himself prior to my surgery! I used it again during the first couple showers after my surgery (when I was allowed to take them). Apparently this area is prone to infection, but I had no issues.
Random side note: get your vitamin and hormone blood levels checked if you're in massive pain at any time. Something like low B12, iron, or vitamin D (etc.) can make everything worse, and it's easy enough to fix. The month before surgery, I ramped up on my B vitamins supplements and made sure I was taking Vit D like I was supposed to. I have no proof that this helped... but my doc referred to me as "a super healer," so maybe it did. I'm also a proponent for being strict about eating non-fried healthy foods and high protein pre- and post-surgery for a little while, but again have no proof on that :)
Good luck and hang in there! Read the doctor reviews on this site before you go see someone about your coccyx.