Coccyx pain and long term options

Amy - ajett@rochester.rr.com

Hello all. I have been reading about your stories and my heart goes out to all of you. I can relate to your pain, and its impact on your lives, I rejoice when I read of successful surgeries, and grow frustrated when I hear of them not working.

My name is Amy and I have been suffering from coccyx pain for years. I guess I never realized this problem is so wide spread. I often feel like an island, or freak of nature that nobody knows what to do with.

I first broke my coccyx in 4th grade while roller skating. I fell and my tail bone landed directly on a metal wheel of a friend. I guess this would have been in 1980 (ish). For a period of time I sat on a donut while attending school and after a while that was not necessary anymore. I continued on with sporadic pain (probably once or twice a month or so) which was so severe I could not move. It was generally short lived in nature, lasting a few hours. Relief was found in a hot bath. This went on for years.

I lead an active life. My husband and I have five children, and we enjoy many activities together such as boating, jet skiing and snowmobling.

In 2001 I was decorating the Christmas tree, putting the lights on the top standing on a chair (like you're not supposed to, but who wants to go get the dirty ladder and put it on your nice living room floor?) and I fell, once again breaking my tailbone. The pain ripped through me like a knife and again I was rendered incapacitated.

Familiar with the pain and its origin, I did not immediately go to the hospital and opted to lie in the tub. When days of pain went by, I decided to go to the doctor. X-rays showed that when my tailbone was healing years ago, it generated too much bone and it is now deformed. I am a small person, and the protrusion is evident to the eye. I have been told that most tail bones move when you sit, and mine does not. Any sitting puts direct pressure on my spine causing pain.

My job requires that I sit (I work at a computer all day), so I purchased a 'tush cush' which historically has lengthened the amount of time I can sit pain free.

My husband's cousin passed away two weeks ago and we drove 8 hours to be with the family. You can probably see where this is going right??

I have been in pain for 2 weeks. Over the years I have devised various ways to relieve my pain. At the initial onset (I can generally tell when it's coming), I use icey hot. If that doesn't work, I take a hot bath. If that doesn't work (and it generally does) I place a tens unit in strategic places on my buttocks near my tailbone. I'm sorry to say that none of these methods have helped. I received a cortisone/steroid shot 3 days after the pain developed which provided relief for about 8 hours. That was wonderful! I wonder if they have "home versions"? (I'm kidding)

In my tenure with this pain, I have been to various doctors and specialists and I'm sorry to say that I really don't think they understand. I end up with "here take this acetaminophin" or "go to physical therapy". I do stretches independently which do provide some limited relief. But I fail to understand how physical therapy is going to shrink my tailbone.

Finally, I broke down last week and went to the pain clinic. I have a relatively high threshold for pain, and I had reached my limit. During the consultation with the nurse, we discussed the pain and where it is. We discussed my mental state, which I must say is not all that good right now. Historically, my husband and I would take the kids snowmobiling, and I knew it would hurt me but most of the time the pain didn't come until later..at night. And we build memories with our children that would last a lifetime, and the pain would only last a few hours. To me, it was worth it. Now, I can't even think of driving or riding in a car for an extended period of time (more than 15 minutes), keeping up my house the way it should be, finishing getting ready for Christmas…nothing is the way it should be and if I was working with Martha Stewart, I'm quite certain I would be fired. I spend my days lying on the couch with heat, shifting to standing (which too causes more pain if I stand too long…and frankly I don't understand that at all), or laying on the floor stretching my lower back.

They prescribed Gabapentin, which I am supposed to take one a day at night for a week, then increase to one in the morning and one and night, the third week increasing to one in the morning and 2 at night. I was also given Effexor XR which I take 37.5 mg the first week, and thereafter take 75 mg, and Celebrex, 200 mg once a day.

I am not big into drugs of any sort. I don't even drink. (I'm sort of a control freak and want a clear mind at all times, probably a byproduct of having a bajillion kids that could need you at any second.) I have broken my long standing resolve and am taking all these medications that make me dizzy all the time, I feel like I'm in a haze, my brain does not compute things quickly, and I'm quite tired. In their own way, the medications are quite helpful. The knife has been removed from my back, however I can still feel that there's something wrong. The only was I can describe it is like getting a filling. You hear the drill, and know it's supposed to hurt…but it doesn't. I have a very dull pain (much better than the knife) through my hips and up into my back.

The doctor mentioned freezing the nerves, which I may be a good candidate for since the cortisone shot worked briefly. I asked about removing my coccyx and was given the old school answer that it doesn't work half the time.

I guess through all this rambling I am trying to provide enough information to get accurate insight. Has anyone had such a problem (too much bone)? Have they tried the freeze? How did it work? What was it like? I would really like to take a hack saw to my tailbone myself sometimes…but I can't reach it properly. ;) I live in Rochester, NY. I don't see any doctors on this site that perform this surgery in my area, and obviously I would want someone well versed in the matter. Would I be what is considered a "good candidate"?

I'm sorry this is so long, and would appreciate any insight. I will continue to read through the stories to see if there is one that matches my situation more directly. Should you chose to mail me, please be sure to include the word coccyx in the RE: line. I generally don't open emails from unknown sources. I sincerely thank you in advance and apologize for any typos….

Amy

Updated 2005-12-18

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