Taken the decision to have a coccygectomy

Carol - McKinney, Texas, USA - cyackinous@yahoo.com

Posted 2019-12-21

Since falling on my tailbone on a hard, wide, wooden, low arm of chair in November 2018 and "snapping my tailbone at the joints", I've been on a long journey of life altering pain, doctors, conservative treatments and finally made the tough decision to have a coccygectomy. My surgery was this past Monday, 12/16. I used this wonderful website extensively as a resource to help me find the right treatment and to make my decision, so I'd like to share my story with others.

Immediately following the trauma, I had intense pain, but nothing that led me to rush to the ER. I was hoping it was just a bad bruise that would heal on it's own. The next morning getting out of bed, the pain was really bad and aching, but each day following got better and I was able to shift positions to deal with the pain. Everything I read on line suggested these injuries mainly heal on their own with time, so that was my plan and I didn't go to a doctor because it was manageable and I figured I would get the same advice. I was even training for my first half marathon and was only 1 month out at the time of the injury, and because I did not feel pain when standing and running, I continued and successfully ran the race in my goal time. I even did a second half marathon a few months later since I was already trained. About 4 months after my injury and after a very long plane ride to Australia for work (17 hours one way), my pain started to be more intense and continuous. It was radiating pain not only upon directly sitting upon my tailbone, but also standing and laying flat on my back where my tailbone was slightly protruding. I couldn't sleep well and sitting at work was becoming unbearable. That's when I decided it was time to see an orthopedic doctor.

I went to a doctor in the ortho group I have seen before for a different injury, and he was not very helpful and certainly not empathetic. His X-rays indicated I dislocated my tailbone about 30 degrees. Although he was "nice" and did all the conservative treatments typically recommended - NSAIDs, in office steroid shots in the muscle, coccyx cushion - he did not explain things in any sort of detail and dismissed my pain. I continued to have pain despite those measures, so he ordered and MRI and suggested targeted injections under anesthesia. When the MRI came back, he said it was all good and clear. I asked him what that meant considering he previously told me my tailbone was dislocated and my pain has not subsided. I asked him which direction my tailbone was dislocated in and he said "he couldn't remember" and that "I must have broken my tailbone as a kid and it's just flaring up". I knew exactly when I broke it the previous year and was so shocked by his response. He never once showed me my scans or my MRI. I couldn't believe his lack of engagement or explanation. That's when I decided not do to the injections with him, and asked him to prescribe physical therapy and chiropractic care so I could start taking my treatment into my own hands while I searched for a more knowledgable doctor. The Chiro care helped a little with my overall alignment, as everything else with my back and neck were getting out of whack due to compensating my sitting so I would not put direct pressure on my tailbone. The best thing that happened was finding a pelvic floor PT (Cara Hartoon). She was so knowledgeable about my injury and was able to tell my coccyx was hypermobile from her physical examination. She tried to mobilize it, but was very honest with me that she felt PT would not fix my problem and I likely needed surgery, She put my in touch with Dr. Robert Myles who had helped so many of her patients. He practices in the FT Worth area, but I would drive anywhere at this point to get treatment from the right person. BTW - both Dr. Myles and Cara Hartoon are listed as recommended specialists in the DFW area on this site (see Doctors and specialists in the USA, Texas). I highly recommend both!

Dr. Myles was extremely empathetic and has tons of experience helping patients with coccydina and tailbone injuries. He also wanted to try the conservative treatments first. Oral steroids, more effective NSAIDs that didn't rip up my stomach, and then 3 rounds of targeted steroid injections under anesthesia. He did extensive X-rays and walked me through the results to show me exactly what parts of my tailbone were dislocated and loose. He has the best bed side manner and really cares. He also wanted to try everything else before surgery, but after I met all the criteria (over 1 year from trauma, some success with injections, hypermobile coccyx), he agreed the surgery was likely going to be the solution. He has done 200-300 of these procedures and has learned from the doctors who developed much of the methodology that is used today. As this surgery is very prone to the incision opening post operation and also infection, he has learned that implementing several practices really help speed recovery and minimize these problems. He makes the incision as small as possible. He does an internal z-flap of securing and sticking the muscles under the skin to keep it closed with dissolvable stitches. He then does another set of stitches on the skin that he keeps in for 3 weeks. He attaches a provena drain over the wound site upon closing - this keeps the fluid out of the top and internal layers, keeps it completely sealed from bacteria that cause infection, and applies some structure on the wound to prevent it from splitting open. I will have that on for 1 week. I am also doing daily hyperbaric oxygen treatments to increase o2 in my blood to accelerate healing. I will do 7-10 sessions over the 2 to 3 weeks following my surgery.

So, I had the surgery this past Monday, first thing in the morning. The procedure was less than 1 hour. Dr. Myles confirmed the 2 lowest segments of my coccyx were very loose and indeed pushing on the parts of my body directly where I was experiencing the pain. The top segment was very stable, so he left that one and only removed the bottom 2. I was able to go home around 9 PM that night so I could sleep in the comfort of my own home. I'm on Day 4 post surgery and doing quite well. The pain is manageable with Hydrocodone and Gapabentin, It mostly hurts if you put pressure on the incision - which you are not supposed to anyway, so I'm steering clear of that. The hardest part of this so far is that I'm not allowed to sit directly on my bottom for 2-3 weeks! It's very hard to say the least, as I'm a very active person. So I'm standing, laying on my sides and trying to get out of the house to slowly walk to keep my sanity. Also, going to the hospital by my house for the 2 hour hyperbaric O2 treatments have been breaking up the day. I have to lay on my side in the passenger seat when driving there. It's hard to tell for sure, but I do believe I no longer feel the poking of my tailbone into the muscles like I was feeling before. As I'm not sitting, I'm not able to tell if the pain of sitting directly on the tailbone is gone. Only time will tell - but I'm optimistic.

I hope to share an update in a few weeks and that I continue to heal and have less pain. My Christmas gift to myself this year was to give me a painful 2020 and beyond. I'm truly hoping that's the case!

Update, 2020-05-31

I'm excited to report that the surgery successfully addressed the problem, however, I did experience a challenging, long recovery. Given the way I broke my tailbone, surgery was really the only actual long term fix and I'm happy I made that decision.

I had some complications at 2 weeks with an infection that delayed and challenged my recovery but I'm doing great now. Because of the infection, I had excessive draining that slowed the closing of my wound and required healing from the inside out. Diligent, knowledgeable wound care is key to keep the wound clean and healthy. I saw a wound care doctor regularly once the infection was addressed who helped me recover quickly and safely and prevented me from getting another infection.

So, I didn't start sitting until 9 weeks and with that I had some back and neck pain from having my body in awkward positions laying on my side or standing only for so long. I also had extremely tight muscles from the surgery flap and a lot of tenderness and itching on the incision that I needed to work out with stretching the muscles and patience/time. Thankfully the surgical pain is mostly gone now from normal sitting, stretching and more activity. I definitely can over do it with over-activity and too much sitting and need to be careful with certain hard surfaces - and can experience flare ups. Resting a few days will resolve it. Avoidance of those triggers is key if I can help it. I'm also using vitamin E and anti-inflammatory cream on my incision twice a day which is helping with healing and comfort.

The tailbone poking pain was gone immediately after the surgery and has not returned. The muscular and incision pain from the surgery gets better each week. At 5 months post op I would say I'm 90% better. Although recovery was daunting and rough, I'm now clearly on the other side and very happy I made the decision to get the surgery. I'm glad I did it sooner than later (just over 1 year from injury) so I didn't continue to cause more damage from the poking bones to my muscles and nerves.

Words of wisdom to those considering surgery - prepare yourself for the long recovery - it's really 3 months at a minimum before you start feeling normal again. On top of it all, this year has been extremely tough for me with being isolated to my home with almost 3 months recovering from the surgery from mid-December to late February and now having to work from home due to COVID. 2020 has been challenging to say the least but I am grateful for less pain!

Update, 2021-08-01

It's been a bit of a journey and I'm still not fully recovered. I had a partial removal in Dec 2019 where my bottom 2 segments were hypermobile and removed. The top bone was left, as it was fused to the sacrum and my surgeon felt best to leave. I improved to a point, but continued to have pain putting pressure on that bone as it dug into the incision scar.

I got more scans and a second opinion by tailbone dr. expert Dr. Patrick Foye. It was determined that the remaining c1 was fused in a position were it was angled somewhat back instead of being tucked under as it should, and therefore was always going to cause issue. I went back for another surgery with my same surgeon (Dr. Robert Myles in Hurst, TX) at the end of Feb of 2021. I am still recovering as there has been so much trauma in this area and my sacrum has been shaved. I have some inflammation still in the surgical site which causes some pain and need time for the sacrum to heal before I can sit back and put pressure on that bone.

It's been a long journey and I look forward to continuing to improve over the next year.

Update, 2022-10-23

I'm improving but still have some muscular and fascia pain in the area. Some days are better than others. I do massage and acupuncture to relax the muscles as well as PT and exercises at home that help. Hoping it continues to improve.