Coccyx removal

Linda

Original posting, 2003-03-23:

I've been suffering for 3 years with a dislocated/fractured coccyx (only recently discovered November 2002!). I won't even go into detail about the many misdiagnoses and wrong treatments during the past 3 years. Just say a wonderful X-ray technician actually listened to me and took the proper X-rays that showed my tailbone pointing inward at a 90% angle and greatly demineralized. After 3 years of constant inflammation I'm surprised I even had a tailbone left! I found a wonderful surgeon in Provo Utah and had it removed on 6 March 2003. Dr. Creig MacArthur is great and came highly recommended. He said my coccyx crumbled when he lifted it and there was a great deal of scar tissue in there due to inflammation over the past 3 years.

Surgery was as out patient, lasted about an hour and I was home that evening. Heavily drugged, but I rode home upright in the car. I have dissolvable sutures, the incision is in the cleft in my buttocks and not visible at all. The next day I was up and walking, but in a great deal of pain and stiffness. I wanted to move as much as possible to keep blood flow going to that area to increase healing. After 2 days I was going up and down stairs - very slowly and carefully. The surgery was quite painful for a couple of days but that diminished quickly.

I'm now 12 days post op and feeling very well. Am active and walking and moving a lot. I can sit for increasing periods of time with the use of a "tush-cush". I have a burning sensation in/around the tissues in that area due to nerves healing, but other than a little stiffness when I overdo it, I feel fine. I anticipate going back to work in about 3 weeks. Will work part time for a week or so before going back full time. I sit at a computer a good part of the day and will be up and moving frequently. I haven't driven a car yet but when riding in one, I have to move around frequently to get comfortable and not stress the area too much. I have been to restaurants and carry my tush-cush with me. So far so good.

I understand complete healing of tissues etc will take a few months, but I feel very well to have made the decision to have this surgery and lucky enough to find a wonderful surgeon who know's what he's doing. After reading some of these personal experiences I was terrified of going through with this. Due to the constant inflammation and demineralization of my tailbone I finally had no choice. I wish more people would share their good experiences.

Good luck to all of you and don't despair. I know I was severely depressed and miserable for a very long time. I'm an active person and kayak, hike, bike etc. My life was put on hold for 3 years and the medical community just couldn't seem to figure out what was wrong. MRIs and CT scans didn't go down low enough to even show the coccyx and I was told I needed to exercise and go to physical therapy! Imagine going to PT and having them try to make me exercise. I nearly screamed after the first attempt and told them NO WAY!! I'm hoping to get back to my health club and begin working out in another month and being back in my kayak by summer.

Good luck everyone and keep the faith.

Update, 2004-04-12:

I had surgery by Dr. Creig MacArthur in March 2003. Just wanted to let you know how I was doing after one year.

I was a bit dismayed to take so long to be pain free. However, I tend to overdo it at every opportunity so wasn't too surprised. I had polio as a child and have a 1/2" leg length discrepancy so that further added to the pulling and stress in that area. One year later I'm in great shape. Should be in my sea kayak this summer and I have several trips planned to Prince William Sound and elsewhere. Last July I was able to sit in my kayak for about 1.5 hours before I just HAD to get out. I used a small piece of foam cut for my behind. Wasn't very comfortable, but worked enough to get me out on the water a bit. This year I'll forego the foam. I'm also riding my bike without any trouble.

Here in Alaska people have somehow found out about my experience and I keep getting calls from strangers asking me about this procedure. Unfortunately there are absolutely NO physicians in this area who know anything about coccygectomies. Believe me, I've done my research and come up with a big fat ZERO! One surgeon who is supposed to be the new "gee whiz" kid on the block said if he did the surgery he'd want a colo-recal surgeon standing by in case he nicked my colon. That was certainly reassuring! He followed that by telling me he wanted to send my films to various docs around the country for confirmation. WOW! That's when I contacted my sister in Utah and asked her to do a poll at the hospital where she works. Found Creig MacArthur and he was a lifesaver. I find it amusing that he's seen at least one other person from Alaska that I've referred and performed a coccygectomy on her -- with great success. Small world out there isn't it?

It does get better folks. There is life after this malady. A word of caution though. I learned that due to the pain in the coccyx area and related ways I was sitting in order to try to be comfortable I was really stiffening up my spine etc. Took some serious exercising to retrain those muscles. The tailbone area felt fine, but my spine was somewhat misaligned and I had to work on my posture etc. Everything is fine now and life goes on.

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