Coccygectomy after nearly 10 years of conservative treatment
Warwick, Melbourne, Australia - quiet.book9467@fastmail.com
Posted 2024-10-06
Summary info
- I'm writing this at 8 weeks after my surgery. It's still too early to tell whether it was a success. I'll send an update once I know.
- at the time of surgery (2024-08-06): male, 40 years old, 80kg, 194cm tall. No known trauma to the tailbone.
- I had mild pain when sitting since age 30, gets worse the longer I sit
- got worse over the years, exercise was the only conservative treatment that had a noticeable effect
- coccyx is bent left, is rigid in flexion and extension, and has minor spurring at the tip
- eventually decided to get my coccyx removed
- 8 weeks after surgery, I'm sitting 15 minutes at a time. Still too early to tell if my pain is fixed due to the surgery pain
Cost of my procedure (uninsured)
- in Australia, you need ~silver level private insurance to cover this (item number is 51150 - coccyx, excision). I'm not sure exactly what gets covered. Definitely the hospital fees, but you may have to pay some/all of the other charges. Insurance is weird.
- procedure: $1140 + $275, $380 Medicare rebate
- anaesthetist: $2000, no Medicare rebate
- hospital: $1485 overnight stay + $1535 theatre fees, no Medicare rebate
- total: $6435, $6055 after Medicare rebate
Advice to my earlier self
- if you are making significant changes to your life to cope with the pain, don't put off treatment, even if it's mild pain. For example, for years, I stood a lot to avoid sitting. Now my knees ache after 10+ minutes of standing.
- thoroughly read the resources at www.coccyx.org (apart from all personal experiences)
- get these diagnoses done: Investigations
- use www.slicer.org to help understand MRI/CT images
- you need to be the expert, as many GPs and other specialists are not familiar or experienced with the condition. You'll likely see a number of specialists. Keep track of your pain, diagnoses, treatments and their effectiveness.
- carefully read and understand the results with the help of your specialist. If you still don't understand, try contacting some of the other specialists listed here.
- even if the surgery turns out to be unsuccessful, I don't think I'd change this advice, since my quality of life had deteriorated to a point where I was willing to try anything
The long story
See my first post : here for some more history
At the end of that post, it was November 2020, I had recovered from a pain flare up and was working full time again. Since then, I've had a few more ups and downs, and finally decided to get a coccygectomy. I'll include some details from before the coccygectomy since they may be helpful.
I got in touch with Jean-Yves Maigne via email for help. For 200 euros, he reviewed my history and MRI images. He advised I do a sit-stand x-ray, from which he diagnosed my coccyx as rigid in flexion. Of the CT scan, he said:
"The tip is clearly pointing to the left (red arrow), as shown on the frontal views of your CT (normal, sagittal axis of the coccyx: blue arrow), with a small bony excrescence. This could be a small irritative spicule."
I saw Melissa Smith at Pelvic Health Melbourne. From a manual examination, she determined my coccyx was rigid in flexion and extension. We tried stretches, exercise, ultrasound & dry needling, none of which had a noticeable effect on the pain.
I tried shockwave therapy at Align Health Collective in Kew for 6 sessions. As a guide, we used the settings in research papers listed at shockwave therapy for coccyx pain, then adjusted based on what I could tolerate. My pain gradually reduced, and I got back to work, starting at 5 hours a day. The pain relief didn't last though.
I looked at my 2019 MRI images using www.slicer.org, which builds a 3D image from the 2D slices in the MRI images. I couldn't get slicer to produce good images from my 2023 CT scan.
Ultimately, Dr. Maigne's analysis, and seeing this image is what convinced me that something really was wrong with my coccyx (even though the MRI specialist had noted spurring in 2019). Given the large number of other unsuccessful treatments, and the knowledge that coccyx was abnormal, I decided to go ahead with surgery.
David de la Harpe Doctors and specialists in Australia (Victoria) removed my coccyx on Aug 6th, 2024. I liked his conservative approach - he laid out all the risks, and didn't give a guarantee of pain relief. We first tried a mobilisation under anaesthetic, since I hadn't tried that before. Once I decided it was unsuccessful, we went ahead with the surgery. He removed the entire coccyx. Once done, he confirmed that my coccyx was bent to the left, with a bit of extra bone.
Recovery summary as at 8 weeks
There are good tips here to cope with the surgery and recovery. I followed all of these. I don't have a pool nearby so haven't been swimming. I was able to take the stairs in my house very slowly and carefully from day 1, limiting this to once per day. In addition to the raised toilet seat, I used a portable plastic bidet + antibacterial wet wipes.
Having someone to help you wash your feet, put socks on, do shopping & cooking is very helpful for the first few weeks. I was able to wash & dress myself at 2.5 weeks and cook at about 7 weeks.
I spend most of my time on the couch in the lounge room. I put a foam mattress on top to reduce the pressure on my hips and shoulders. Also, one end of my couch doesn't have an arm, so I hang my head off that end and put my phone on the floor in front of me. My bluetooth mouse has been very handy for controlling my phone like this.
I had minimal pain for the first 5 days or so, then the dull ache started. It is OK in the morning and gradually gets worse over the day. I occasionally used stronger painkillers for this pain (tapentadol 50mg instant release). By week 6 it was quite bearable without painkillers.
By 4 weeks, I was going for multiple ~10 minute walks per day, doing light chores around the house, standing at the computer for 15 minutes at a time. Most movements that don't involve much knee/hip bends are easy. Bending down results in minor discomfort and some lingering pain for the rest of the day.
At 8 weeks, I'm sitting in my computer chair for up to 15 minutes at a time, sometimes multiple times per day. I lean forward and take a fair amount of weight on my elbows, mainly due to being careful than due to any pain. All other movement is quite easy, even bending to the floor. I occasionally overdo something, for example: cooking dinner, which involved standing in the kitchen for ~1 hour, and taking 3 15+ minute walks in one day. The punishment is increased pain for the next few days.
Advice I'd give to someone in my situation when my pain started
Read the resources at www.coccyx.org thoroughly (apart from the personal experiences, which can be helpful, but aren't essential). Get these diagnoses done: Investigations. Carefully read and understand the results with the help of your specialist. If you still don't understand, try contacting some of the other specialists listed here: Doctors and specialists. I emailed Jean-Yves Maigne, MD, who assessed my imaging and injection diagnostics via email for 200 Euros.
By this point, you'll very likely have a better understanding of the condition in general, and your specific case, than most GPs / specialists you can find. Listen to their advice, but don't follow it unquestioningly. It's your time, money and quality of life that you're sacrificing.
By all means, try conservative treatment before going ahead with surgery. Weigh up the risks of surgery vs. your quality of life otherwise. Don't put things off just because they are scary, or your pain is mild. I stood a lot to avoid the mild pain when sitting, and in doing so, have permanently damaged my knees. My knees ache after standing still at a desk for 10+ minutes now.
Update, 2025-08-10
I had my whole coccyx removed roughly one year ago. It's been a very slow recovery, and is still ongoing. At 10 months, I felt I was in a better state than I was before surgery. Nothing much changed in the 2 months after that.
The image below is a good summary of my progress. Increased daily sit time correlates with happiness, reduced pain etc.
Here's a brief overview of things I could do, after how long:
- I slowly added daily stretches and exercises over time
- 10 weeks: walking for ~30 minutes, clipped my toenails, 1h trip to the shops. The constant dull ache is gone.
- 3 months: doing double-leg hip thrusts, 15 minute slow jogs
- 4 months: played tennis. Bit sore after, but no lasting pain
- 5 months: regressed a bit. Dialed back uncomfortable exercises such as single leg hip thrusts, deep squats, running
- 6 months: picked up exercises again. Single leg hip thrusts are pretty uncomfortable to start, but the pain reduces with more reps.
- 7 months: I can drive for ~30 minutes. It's not comfortable, and I try to take weight on my feet/elbows/hands. Being a passenger is easier but still not great.
- 8 months: started working 4 hours per day. Sit-stand desk really helps.
- 10 months: handling 4 hour work days with ease. Sitting more in my own time. I'm happy and actively seeking fun things to do now. I think I'm better than I was pre-surgery.
- 11 months: I stopped measuring my sitting time. Feels like things got a bit worse shortly after, but now I have no way to tell :) I watched a movie at the cinema, and sat through a 3 hour concert. Both of these had cushy seats that force you to recline slightly - my least favourite seats. Pretty sore after both activities.
- 1 year: I don't feel quite as good as at 10 months, but I think I'm on the mend again. I took a 1 week trip that involved a 2h flight each way. It wasn't very comfortable, but was bearable, and didn't leave any lasting pain. My knees have been more of a bother than my butt recently. They ache most of the time. The doctor said to ice them, don't do high impact exercise or deep squats, take NSAIDs if needed. Maybe I've been walking/running/standing too much. Sigh.
I'm still hopeful that my pain will slowly reduce as it has for a few other people:
Anonymous, 80% OK after 1 year, 100% at 18 months
Tony, 100% pain free after 3 years (maybe sooner?)
Jealous of these two, but still 1 year is a pretty long recovery:
Julie, 99% recovered after 1 year
But poor Ian: the pain still sounds like quite a nuisance after 4 years
