It took surgery to fix it
Anonymous, USA, California
Posted 2023-04-30
My story with tailbone pain began in August 2020 after I got back from a week long road trip. No injury or fall, just a week of sitting in a car all day. The pain wasn't too bad at first and I thought it might have been hemorrhoids caused by all the terrible diner food I had eaten. A colorectal doctor confirmed that there were no signs of hemorrhoids and that it might be something called coccydynia.
I ignored the problem for a few months and the pain gradually worsened to the point where I could only sit for 5 minutes a day. Even standing was agony once the pain started, so I would stand all day. This was when I visited a doctor and got my first set of xrays: nothing was wrong.
I went to a pelvic PT place that did manual manipulations and had me do a bunch of exercises. After 3 months these helped me sit for ~30 minutes a day, but recovery had hit a plateau. The PT noted my tailbone was pulled slightly to the side when I first visited, but otherwise couldn't figure out why I didn't improve.
I got an MRI next, but just like the xray it showed nothing wrong. After that the doctor tried a blinded steroid injection, which resulted in a month or greatly increased pain (don't ever let anyone do a blinded injection for tailbone pain). Next up was the ganglion impar block, but this had the same result: a month of increased pain with no reduction.
My primary care physician encouraged me to try taking pain meds since those got rid of the symptoms. I found a new primary care physician. By this point, my neck, shoulder, upper back, lower back, knees, and pretty much everything else hurt from laying on my side all the time.
In November 2021, I contacted a local surgeon named Dr. Kirkham Wood (see Doctors and specialists in the USA, California) and scheduled a coccygectomy for early 2022. However, after reading all the stories on coccyx.org I decided against surgery. I live in California, but despite the distance I opted to visit Dr Foye in NJ and see if he could help (see Doctors and specialists in the USA, New Jersey).
I did several video visits with Dr Foye in early 2022 and eventually took a flight to his clinic in April. He was by far the most experienced Doctor I had seen and he personally reviewed all the imaging and MRI's. Not just the reports, but directly looking at the images and drawing his own conclusions.
He thought the prior two injections were done incorrectly (too much contrast dye) but even he couldn't explain the tailbone pain. Ultimately, he repeated the nerve block but it only provided a few weeks of relief and the pain returned just as before. I went back a few months later for a nerve ablation. This was the 2nd most painful experience in my life and it caused greatly increased pain for 10 weeks.
At 10 weeks even though it hurt, I decided to force myself to lie on my back for as many minutes as I could take it. This was only a few minutes at first, but within a week I was up to an hour. At 12 weeks I could sleep on my back. I had been in pain so long that even though the triggering nerves were dead, the network of nerves was still working and hypersensitive to any light pressure. It took a conscious effort to retrain that network, but for the first time in 2 years I was nearly pain free. I could sleep, but I wasn't able to sit in a chair all day.
I went back for a 2nd nerve ablation with Dr Foye and began the wait to see if this would deliver lasting & total relief. Jan 2023, 8 weeks after the ablation and the pain was 99% gone. I could sleep, sit all day and I even went back to yoga.
All solved right? No.
Unfortunately the pain started to come back in March 2023. It turns out that my nerves regrow at an unusually quick rate and the first ablation was starting to wear off. While I could still sit in a chair, I couldn't sleep on my back anymore.
All other treatment options had failed me, so I scheduled a coccygectomy with Dr Wood and the surgery is tomorrow.
Dr Wood has published a lot on the coccygectomy procedure and no one else in my state has more experience, so we'll see if he's better than the stories on coccyx.org indicate. His bedside manner is far from Dr Foye's.
I'd say "terror" accurately summarized my mood this evening, but it isn't due to the surgery or the lengthy recovery. Throughout all of this, all the Doctors I've visited and diagnostic imaging performed, there is no evidence of the pain I feel. Tomorrow I'm having surgery for something that is entirely in my head. Is this the nocebo effect? Is this Munchausen's? Am I crazy?
We'll see.
Update, 2023-09-26
Not crazy, but not cured either. The pain is a bit less now, but it is far from normal.
I opted for the coccygectomy surgery after trying and failing all the other accepted treatments. While this is the recommended treatment course, I had other reasons for not wanting to have this surgery.
About 15 years ago I developed something called a pilonidal cyst and had to have it removed with surgery. This surgery failed and I was left with an open, bleeding wound approximately 1x8”. The pain from this felt much worse than tailbone pain, but I also had to deal with frequent gauze changes, infections and chemical cautery (50+ times). Many doctors tried and failed to treat me (some made me worse), but ultimately I found one who cured me. It was the worst 2 years of my life.
Wound healing is a common complication from the coccygectomy, so I was terrified of going through anything like the pilonidal cyst again. I would rather be dead. Luckily for me, the healing process went really well and I credit Dr Wood with the results. Here’s what happened:
Days 1-4: On pain meds, laxatives, etc. In bed with very little movement.
Day 5: First gauze change, covered with blood but luckily it was all dried. No signs of infection, switched to Tylenol.
Days 6-13: Daily gauze changes, limited walking. Can’t bend or move my legs much.
Day 14: See photo, minutes before stitches came out
Day 15-34: Gradually increased walking distances from 5 minutes to 1 hour. Stopped all medication.
Day 35: Drove for the first time since surgery. Needed a lot of Tylenol, but I made it to the follow-up appt. No more gauze and cleared to go swimming:
Note: The lighting/flash make it seem a bit redder than reality. Getting a "selfie" of this area is a challenge.
Day 60: Driving is almost pain free with the wedge pillow. I can sit in a regular chair for ~30 minutes, but it is quite painful. I attempt running but it is still very painful.
Day 75: I can sit for over an hour and finally lie on my back. Still not enough to sleep. I can now run a bit without pain (plenty of lung pain, but that’ll be fixed with practice).
Day 90: I try driving without the wedge pillow and the pain returns. Even when standing it is excruciating. No visible signs of infection or trauma.
Days 91-110: I continued to get jolts of pain over the following weeks. It seems that my nerves that were damaged by the surgery grew back.
Day 118: I ran a mile for the first time in 3 years. No tailbone pain when standing/walking, minimal pain bending. The skin has a pale red scar, but otherwise it’s not really noticeable.
Day 120-140: I decided to take a vacation involving lots of driving, airports and sitting. Absolute torture for someone with coccydynia and it was rough on me. My first vacation in nearly 3 years. The pain is less now than it was before the surgery, but it is over a larger area. It is like a slow burning sensation now instead of a sharp point.
Day 144: So here I am at 5 months post surgery. I had a lot of luck in getting to this point, but unfortunately I am not pain free. I can see a trajectory where I become pain free in the future or regress back to more pain. I really want to call it quits, but I don’t think I could accept that.
I’ll conclude the update with this: You, a reader with tailbone pain, dictate the urgency of this disease. It’s debilitating, but not fatal, so every Doctor you meet will opt for the conservative approach to treatment. No one can see or even truly understand the pain you’re in. If you want results, you need to act.
Update, 2024-01-22
Day 274 (9 months) after surgery: I think I'm cured. The pain is 80-90% gone and I'm not on any medication. I can sit all day at work, watch a movie in a theater, drive for long distances (with a pillow) and sleep. What changed?
I went back to my doctor and he suggested I try pelvic PT. It took several months of manual manipulations and cupping, plus a few new stretches. There wasn't one day where the pain was suddenly gone, but it slowly subsided towards the end of 2023.
I still need to do stretches everyday and cupping once a week or so (I bought a cheap set to use at home). If I skip these for a few days the pain will gradually return, but I'd gladly take this result over how things could have gone.
Quick summary:
* 10+ doctors visited
* 6 months pelvic PT
* 6 x-ray sessions
* 2 electrical pain stimulators (none worked)
* 3 MRI's
* 3 cortisone injections (all failed)
* 2 nerve ablations (temporary relief)
* 1 ended relationship
* 1 coccygectomy
Total Cost: ~$17k (insurance paid $35k)
3 years, 4 months from onset to cured.
Update, 2025-02-16
In 2 more months it'll be 2 years since the coccygectomy and things have mostly improved since then. I had minimal pain as of 2/2024 when I stopped going to pelvic PT, but gradually throughout 2024 the pain began increase until finally in June I couldn't sleep on my back anymore. This lead to a couple new discoveries:
• In order to keep the pain at a low level, I need to do cupping at least every other week. If I go more than 3 weeks the pain will gradually return and it will eventually become intolerable.
• I need to use a pillow to drive. I can do 15-30 minute drives occasionally, but anything longer is painful. If I ignore this pain, it will eventually trigger a flare-up that needs 1-2 weeks to subside. Driving with a coccyx pillow I can easily endure for 6-8 hours a day.
• I need to use a pillow to sit at work. I can make it through a day or two without, but any longer will trigger a flare-up.
Once I learned all these modifications, I got back down to a minimal pain level. I was even able to start doing Pilates again after nearly a 5 year break. Finally, in late 2024 I went on a long plane flight on vacation for the first time since 2019. This was a 10 hour flight and even with the cushion the pain was pretty bad, but fortunately it didn't last more than a day after I arrived. For longer flights I would probably need some mild pain medication.
I have yet to try sitting on a bike, but I'm slowly working my way up to it with a stationary bike and maybe this summer I'll give that a shot. While the I wouldn't call these results a total cure, it's good enough for me to live my life mostly free of tailbone pain.
Lastly, I'll mention that the scar is completely gone. Aside from a little extra lumpy skin, you'd never be able to tell I ever had surgery.
