Terri - firstname.lastname@example.org
I had my coccygectomy on January 16, 2007, about six weeks ago. I've had terrible coccyx pain since July of 2000. I don't even remember falling on my tailbone, but my house had flooded and I spent several hours vacuuming water out of carpet, and I think I slipped and fell on my bottom. My daughter says she remembers my complaining about it. I developed the coccyx pain after that, as well as lower lumbar and sacro-iliac pain, so the issue was a little unclear for the first few months. But by far my worst problem has been my tailbone pain when sitting. I weigh about 140 lbs., but the weight of my body on my tailbone was unbearable. It's been six and a half years now. Because I've been watching this web site for years, I've learned many ways of coping. For years I've carried a sacro-cushion, disguised in a black tote bag, and never sat without it. I've spent a fortune on things that would help me with the pain - over a dozen cortisone shots, over 20 weeks of physical therapy, bought a massage table so I could work on my computer face-down, two very expensive chairs, umpteen cushions, etc. I went to Mayo Clinic, and tried multiple doctors, but got no help. I had multiple x-rays, CT Scans, MRI's, all to no avail.
Finally, because of the success stories on this web site, I got the courage to look for a doctor to remove my tailbone. Friends referred me to a neurosurgeon in my area who had done a lot of spinal surgeries with a high success rate. I went to see him, and he told me he'd never done a coccygectomy before and had never considered doing one. But he agreed to do some diagnostic tests to see what was wrong. He sent me for a 3D CT Scan. For the first time, we got a clear picture of my coccyx, and the 3D computer model allowed us to see it from every angle. My tailbone looked as if it had been broken and fused back together at a 90 degree angle. For years I'd told doctors it felt like it was sticking in me when I sat on it. Finally, it appeared that I was right.
Because of the severity of my problem, my doctor said that he would do the surgery on me, but he told me that since he'd never done one before, he would have to have time to study how to approach it. I brought him many of the letters from this web site, as well as the medical papers posted here, and he found all of the medical papers that had been written on it and studied them. I considered going out of my state to have someone more experienced do it, but I couldn't stand the thought of traveling home when I couldn't sit.
Dr. Michael Vise performed my surgery on January 16. Before it, he told me to start eating a light diet for about four days before. I also began to wash with antibiotic soap for about a week before the surgery and for about a month after. Two nights before surgery, I began using enemas to clear my bowels, and I had only a liquid diet the day before surgery and took Half Go Lightly to continue to clear my bowels, a fleet enema that night, and another one the morning of surgery.
The day of surgery, the doctor sent me first to radiology, and the radiologist used radioactive dye to mark the bone where my surgeon wanted to cut. He did this by deadening the area and injecting a needle with the dye. This enabled the surgeon to keep my incision very small - only two inches - because he knew exactly where to cut.
I was on the table for three hours. My doctor had decided that the best approach was to drill the bone out under microscope, leaving the periostium (bone skin). He said that's a very tough tissue, and the muscles and tissues attaching to the tailbone could remain attached to that tough tissue. He felt that leaving that periostium in place would provide the barrier that the tailbone provided before, so that I wouldn't get a rectal hernia or have any problems with anal or rectal function. Also, he felt that this would keep him from having to give me any subcutaneous sutures, because those invite infection. He then deadened some of the tiny nerves on the sacrum around where he'd cut, (the tiny nerves that send pain signals to the brain). After he got the tailbone out, he irrigated it with antibiotic fluid, then put me on a strong IV dose of antibiotics for several days. He put a drain in so that blood wouldn't pool in the wound, because that was another thing that invites infection and abscess.
I woke up with a catheter, blood clot stockings, an IV, and a drain, but I was told the surgery had gone perfectly, so I felt great. He kept me in the hospital for four days. The cath came out after the first day, but he kept me in until he was comfortable that there wasn't much blood draining out. The he removed the drain and let me go home. He kept my stitches in for three weeks because he wanted to make sure the incision had healed well enough before taking them out. My stitches were covered with a bandage all that time.
I was able to lie on my side or my stomach, and I could walk around. I was given Hydrocodone for pain, but I didn't actually need much of it. I didn't have much pain at all.
Six Weeks Post-Surgery
I had a little aching in the tissues around my incision, and my buns feel swollen, but I haven't taken much more than Naprosyn for the last few weeks. I'm six weeks post-surgery now. I'm just now beginning to try to sit. I can sit for a couple of minutes on a cushion (very carefully), but not much more than that. That's okay, though. Because I've read the other experiences, I feel that I'm healing pretty much according to schedule, and maybe even faster than some. I've had no infection and no setbacks, so I hope I'll be able to sit pain-free within the next couple of months. I really appreciate how cautious my doctor was, because it all worked to my advantage.
4 ½ months Post-Surgery
I'm a little discouraged at this point because I'm experiencing a lot of pain. I'm sure it's because I'm sitting too much. I began driving again at about ten weeks post-surgery, and I try to do my normal activities - which is a bad idea. I also have to sit to work, but since I work on a computer at home, I can stop to lie down when I need to. I'm pretty good at working on my laptop lying down. I'm afraid of addiction to pain-killers, so I only take Naprosyn and Ultram. But I'm sure praying that I'll continue getting better, because if this is as good as it gets, I'll be pretty depressed. At this point I feel like I haven't really caught up to where I was just before the surgery.
I hope my story will help others who are about to go through this. Above all, ask for a 3D CT Scan, so they can see a clear model of your tailbone. That's what finally got my doctor's attention. I don't think my doctor wants to do many more of these, but he did consider it a challenge and took it very seriously. If you have a doctor who doesn't want to review the literature written by experts in this type of surgery, then find someone else. There's a lot to be learned about what has worked and what hasn't. The infection rate on this type of surgery is very high, but it doesn't have to be that way if things are done correctly.
By the way, the reason so many of us have been dismissed by doctors is this. Back in the 1900's, there was a trend among doctors to remove the tailbone for several different ailments. It was considered a cure-all. Around the turn of the century, they started to realize that it wasn't helping all those things, and the pendulum swung the other way. Suddenly, doctors who removed tailbones were considered quacks. Finally, doctors refused to remove them at all for fear of being called quacks. As a result, people who really needed to have them removed were dismissed, because the prevailing thought was that coccygectomies didn't work. But the question was, work for what? No, they didn't help diseases or whatever else they'd been removing them for, but when there was a structural problem, did they work? I guess no one took the logic that far. That belief is still prevalent today, so most doctors won't even consider doing them because they feel it would hurt their reputations. But maybe with the 3D CT Scans and the clearer pictures of the structural problems, doctors will begin to realize that it's a necessary surgery.
I'll keep you updated about my progress. I haven't been sent for any physical therapy yet, but I'm trying to do a little stretching. If any of you know what I should be doing, I'd appreciate an email.
10 ½ months Post-Surgery
I wish I could say that I'm healed and moving on with my life. I do feel that I've healed from the surgery, but I'm no better than I was before it. I still have pain when sitting. I am able to do a lot of sitting, but the pain is always there. I'm taking 300 mg of Neurontin three times a day, plus anti-inflammatories and Ultram sometimes. I won't say that it's agony - not at all. But sitting more than half an hour can be pretty painful. I still carry a sacro-cushion everywhere I go.
My pain is primarily on the left side, just like before. I was absolutely certain that my misshapen tailbone caused it. Now I'm wondering if it was that at all, since the pain is exactly the same. Sadly, my doctor died before sending me for physical therapy, so now I'm not sure what to do.
If any of you know of the right exercises to do, I'd really appreciate your letting me know. I'm trying to find another doctor in my area. I'm nervous about exercise because of the fact that he burrowed the bone out and left only the bone skin to hold my gluts. I'm scared of tearing something now, though I am beginning to do Pilates and walking.