John - firstname.lastname@example.org
My name is John. I had my tailbone removed in May of 2013. The decision was easy after many months trying to determine whether there was the possibility of infection. I believe my story is unique in that there was nothing for the basis of the cause of the pain and resulting debate over the MRI reports. I conclude that this became a battle of the radiologists and highly recommend that you locate the one with the most experience; probably one from a large (orthopedic) hospital with as much experience and focus. And although I spent additional time and resources ruling out infection, it was worth it as it lead to the real cause of my pain.
About 3-4 years ago, I noticed a very small pain in my tailbone. During a visit to my General Physician (GP), I asked about it. Not much time was spent on the topic and he noted it in my file. After 3 years, my beautiful and supportive wife lovingly forced a physical on me. It was time. At the time, I noticed that the pain was more noticeable, but only when I sat down on a hard surface. Not too worried, I told my GP about it. Again, not much time was spent on the topic and he noted it in my file. He asked if I had fallen or done something to cause this, to which I said, 'no'.
Over the next 3-4 months, the pain was more noticeable. The pain was no longer apparent on only hard surfaces, but during long drives and sitting at work for a long periods of time. The pain was especially noticeable when getting up from a chair. Note that the pain was getting a little worse over time. At this point, I knew something was wrong and went back to my GP to do something about it. In that visit, he again asked if I had fallen down, etc. I indicated (again), 'no'. I had done some research (thank you internet) and concluded that it was probably due to ligaments. This was based on the problem I had with my feet (plantar fasciitis) in which the doctor described that ligaments later in life are like 'old rubber bands'. They do not stretch as well and will tend to tear causing inflammation and pain. Stretching is crucial. But how do you stretch a tailbone? My GP recommended I see a pain specialist. As with my foot, a cortisone shot can reduce the inflammation and allow the ligaments to heal. There are side effects and I decided with stretching and inserts for my feet which was the right decision! With the tailbone, I thought that the cortisone shot was the only solution.
Pain specialist - To cut the story short, every doctor wanted to know if I had injured the area by falling down, etc. The answer was 'no'. The pain specialist examined the area around the tailbone and was not exactly sure what was causing the pain. He requested that an MRI be done. Here is where the story gets very interesting and a lesson on how to interpret MRI images & doctors. An x-ray and MRI were done without contrast (no dye). The report indicated a 'sinus tract' between the rectum and anterior (inside) of the tailbone and also anterior of the sacrum showing possible infection. These images showed inflammation at the joint where the coccyx meets the sacrum. There was also 'bone edema' or fluid in the bone. The identified sinus tract landed on the anterior side (inside) and stopped. The pain doctor and GP recommended that I go to the colon rectum center. Questions were asked about a potential pilonidal cyst or ingrown hair, etc. But that did not make sense given this slow increase of pain first noticed 3 years prior. Blood work was done which did not show infection. This scare of infection had family telling me that I could die if the infection enters the spinal cord. This is because we have a family friend / radiologist who confirmed the MRI report.
The colon rectal center & the possible pilonidal cyst – Like the physical, my gracious and lovey wife wanted a colonoscopy performed. This was done under the new stress that possible infection existed, waiting weeks to get the procedure done with pain getting worse exponentially. After the procedure, the doctor came to recovery and said, 'you are the perfect asshole'. At my age, he had not seen such a clean pipe. Asked what he thought this sinus tract possible infection was, he said, 'no clue'. He also indicated that there was 'no excessive movement'. Remember that! So I decided to find an orthopedic surgeon. It was obvious to me that the problem was the tailbone where it met the sacrum. Given this fluid was on the anterior side (between the colon and coccyx, nobody wanted to take a biopsy; no needles. I was thinking fungus or parasite landed on the tailbone. The GP reminds me that there was no sign of infection in the blood work. Now, it's time to visit the orthopedic! Something wrong with the bone or ligament was my initial thought at the time and I communicated this to the pain doctor.
Finding the right Orthopedic doctor – I decided not to take my GP's recommendation and find my own doctor. The criteria? I wanted someone familiar with tailbone issues, typically a spine specialist and had no concern to removing the coccyx. Given this infection concern, I wanted someone who has removed tailbones, who is older with said experience, and who would know what to look for if the decision was to cut. I do not recommend choosing a doctor who has little experience.
Orthopedic visit: My 1st visit was interesting. He reviewed my files and the MRI report and told me to go to the colon rectal doctor. I told him that I just came from there and that this was now his problem to solve. So he reread the report and decided that the radiologist was 'hedging his bets' by stating possible infection; however, he would not recommend putting a needle anywhere, especially between the colon & coccyx. We ordered another MRI, but this time with contrast (dye). This MRI did not show 'as much' fluid. During this time, I started standing up at work, sitting on a donut, etc. The MRI did show inflammation. I told him about the fungus / parasite concern or even possible tumor. We ordered a bone scan which would rule out cancer, infection, and tumor of the bone. The bone scan proved negative w/blood work indicating no infection. Decision point: What is it? The orthopedic doctor told me that if it was his ass, he would go to MD Anderson (Houston). They have seen just about everything and less risky if a biopsy was required to pull the fluid. Off I go... By the way, a sign of a good doctor!
MD Anderson (MDA): Their initial focus was possible cancer, infection, or just coccydynia. They ordered x-rays and CT scan. The CT scan was to look at the surrounding tissue. The results came in. There was a minimally displaced fracture with mild surrounding soft tissue edema. No evidence of fistulous connection (prefect asshole still!) They concluded that the coccygeal fracture fragments remained separated with sclerosis across the fracture plane consistent with nonunion. Basically, a fracture which would NOT heal! This told me I could rule out infection; although not 100%, I was ok. The MDA doctor gave a textbook resolution, non-surgical treatment. It is not recommended to remove the coccyx. I was confused given the non-union fracture. I wanted it out! He had only done this operation twice, but had removed partial sacrum, etc. Although I have total faith in MD Anderson doctors, I went back to the 1st orthopedic doctor based on my criteria (above).
Orthopedic visit 2: We reviewed the MDA reports. Here is where I conclude that finding the right radiologist is key. Seeing the fracture and concluding a non-union was the only way to get to the right conclusion and 3 radiologist had missed this. I had two choices, cortisole shot or coccygectomy. I choose coccygectomy.
Surgery – This is a basic surgery: Outpatient. I was going to go home the same day. My 7 AM surgery was delayed to 3 PM, so I stayed the night. The doctor will want to see you the next morning anyway. He indicated that he saw no pus or any sign of infection. Everything looked good and he said that there was excessive movement (missed in colonoscopy exam). In hindsight, I should have elected to stay overnight. The concern of driving home (1 hr) after the surgery is valid. On the trip home, I laid down on the back seat. I stayed home for two weeks. After 10 days, the stitches were removed. I had another visit one week after the removal . No problems. Kept things clean. The best advice came from the doctor. He told me to use a Kotex pad. Also, told to stay in bed! In addition, I stuck to a strict diet to reduce inflammation. I actually lost weight during this time. The only risk was infection of the surgical site. If you get one, then the surgeon/doctor will have to open up a flap to let it heal (from inside out). This adds time and frustration. I recommend that you do everything you can do to stay clean. Have nurses wash hands, etc. I did attempt to drive to work after the 2nd week. Do not risk it. I stayed home for 1 month.
Pain after surgery: From my research, most people choose surgery later than I did. The pain after surgery was actually worse. It has been 10 weeks now and the pain is about the same level as when I went to my 1st visit to the pain doctor. But... the pain is going the other way! I am told that it will be six months before I stop noticing the pain.
Conclusion: In my opinion, any inflammation is bad. Your body will try to heal any area of the body where there is inflammation. This explains the fluid, sinus tract from the rectum, bone edema, etc. With regards to the sinus tract, I could not conclude that fluid travels up as it would have to do in my body as identified in the MRI report. Even pilonidal cysts travel sideways and down. This is basic gravity. This is why I forced the issue to the Orthopedic. A cortisone shot would have been the solution if I had not pursued other options, but try to avoid this until you are most certain of the cause. Cortisone will allow for healing if you hit the right spot and treat the area with great care over a long period of 'healing' time. Note: You are not able to have surgery until the cortisone clears your system. Knowing that I had a non-union fracture besides any ligament issue, having a cortisone injection made no sense and the pain might come back. Regardless, as I age, I knew I would be sitting more! Find an experienced doctor who has performed many coccygectomy and feels comfortable performing the surgery. The older doctors know what they are looking for when they cut you open. Ask how they tend to those pesky ligaments!
Last, research! This site was so helpful. When infection was discussed, I had a great amount of stress. I was able to read about others' experiences and email a few people.