Help! Desperate Mom

Ann - annshairandbodystudio@yahoo.com

Original posting, 2004-10-31:

My daughter started complaining with pain at the tip of her tailbone about three weeks ago, and could not remember any injury. When it persisted for 3 or 4 days I took her to a Dr., with no progress. At this point we have had a CT scan, normal, and seen and osteo Doc. who diagnosed her with coccydynia. He said this was uncommon in children and he had very little explanation and stayed very vague about how long we can expect this condition to last.

We begin Phys. Therapy tomorrow with heat and ultrasound therapy. He also suggested that I will probably have to take her out of school and put her on home bound instruction, which I do not think would be something we would want for her. However, after 3 hours at school today her teacher said she thought it was impossible for her to stay in the classroom because she was in so much pain. She has been using the ring cushion, and was allowed to lay down, stand up or whatever she needed to do to be comfortable, but she is completely miserable. She seems to find very little comfort in almost any position for over 10 min. She is not sleeping well at all and is becoming extremely frustrated. The pain seems to be getting worse and is moving up her spine into her lower back. So I supposes I will have to take her out of regular classes for now.

She has been on steroids for 4 days, Tylenol every 4 hours and now Bextra (Advil was upsetting her stomach) and using the hot tub. Is there anything else I can do to help alleviate her pain? I would also be very interested if anyone who has children or heard of children with this problem. We live in a small town , but have considered taking her to a children's clinic about 3 hours away, but if she is PT here I'm not sure that would be a solution. Also, I think I should give this Doc. a try, but how long is long enough to wait before I try something else?

Update, 2006-01-22

We went and saw Dr. Maigne in France in August (see Doctors and specialists in France). After viewing X-rays I sent he believed she had a spicule at the tip of the bone, or it was malformed. He did an injection there, and it was successful. Within in days her tailbone quit hurting. She has small episodes of pain, and must sit with a pillow, and bending can still be uncomfortable, but it is nothing like it was. It had not stopped hurting in almost a year, except when numbed with lidocaine. We are preparing to have the procedure repeated here locally within the next few weeks in hopes it will finish the healing process. Dr. Maigne suggested that at times it takes multiple injections.

There are a few things from our experience that I would like to pass on to the coccyx site that I hope will be useful to someone.

1. My child was 10 when this began and somewhat overweight. When reading through some many studies and I came across what information I found on spicules it was noted that only very thin people would have pain from this type of malformation, for lack of cushion. This proved not to be true in my daughter's case.

2. The treatment of a lidocaine/cortisone injection had been done 3 times before we saw Dr. Maigne, all with only very temporary numbing results. Dr. Maigne said that the exact spot must be hit for results-- he was correct. Even after Dr. Maigne had kindly viewed her x-rays I took his initial diagnosis and the films to numerous Dr.s' at very prestigious Clinics and none of them had even heard of a bone spur on the coccyx. Dr. Maigne was our savior from these circumstances. I would urge anyone who can not find help to seek his expert care.

3. My daughter developed fibromyalgia about 6 weeks after her nonstop coccyx pain started. After seeing Dr. Maigne we took her to a fibromyalgia/chronic fatigue specialist who is world renowned, Dr. Charles Lapp in Charolette North Carolina. He said she developed this secondary condition because she was in so much uncontrolled pain from her coccyx and the sleep deprivation it caused. This situation altered her central nervous system and the way her body perceived pain, thus she developed FM/CFS. This is a condition that has no known cure, other than God. Many suffer their entire lifetime with it.

If you, or your child, is in extreme pain keep diligent until you have some help. In hind sight I should have made the global trip to see Dr. Maigne much sooner. In our experience there is no one with his expertise on this subject, and we have looked desperately.

If there is ever anything I can offer to those searching for help please write to me at: annshairandbodystudio@yahoo.com

Ann

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

Medical papers | Personal experiences | Links to other sites | Support groups | Site map