Incapacitated

Anonymous

I stumbled upon your web-site after typing coccygodynia. I was going to print out the definition of this affliction and mail a copy to a general surgeon I recently saw for a different medical problem who was not familiar with this condition. I have had some very interesting conversations with doctors about this medical condition. There are many doctors out there who say there is no such thing as coccygodynia or coccydynia. To someone who is suffering and looking for someone to help them, this can be devastating to offer no hope. I am a sufferer and I have been disabled for the last 9 1/2 years. First four years I was completely incapacitated with coccyx and sacrum pain, not even able to dress myself, following my first time sigmoidoscopy.

What I have is very rare. My coccyx and sacrum were injured from lifting in a bent over position, an item that weighed almost 200 lbs while at work. (I was a 29, single mother of two, and I weighed only 100 lbs. This became a workers compensation claim because I was hurt while employed and if you are or are not familiar with workers compensation, they are an insurance company for the employer not the employee. For two years following that injury, I struggled with all sorts of procedures to combat pain. Nothing showed up on MRI or x-rays so the workers comp doctors concluded that it was more ligament tearing and nerve damage to the lumbar so I was told that a nerve block would help me with pain. Notice that the doctors only concluded it to be lumbar and not specific with saying sacrum and coccyx.

Nerve block did take some of the pain, not all, and I had a lot of swelling and complained of this swelling saying it felt as if I was sitting on an orange. Doctors said they never heard of such a thing. Nerve block made me feel better but the damage was still there. It was also during this time that I began to have bladder trouble but I was being retrained by attending a technical college and did not make the connection with the bladder trouble being caused from my low back. The injury itself took place in the summer of 1985. After retraining, I spent a lot of time sitting at a desk, and that was when the coccyx pain began to really appear again. I was sitting on heating pads on and off and it seemed if I lifted anything, it acted up but would subside slowly. In 1995, I had the sigmoidoscopy procedure done and was totally incapacitated with pain within a few hours of that procedure. I was taken immediately back to the doctor who performed the sigmoidoscopy thinking my symptoms resulted from that but what happened was the coccyx had dislocated, not from the sigmoidoscopy but from the unstable ligaments to that area injured from the 1985 lifting injury.

Did we know this at that time, no? I did not know what was wrong, only that I was now disabled and living with the fact that I was in pain, the most pain possible for any human being and no doctor would help me.

I went to the chiropractor I had been seeing on and off but considering that the condition on my back before the sigmoidoscopy was tolerable, I was living a life, now I had no life and I could not sit, walk alone, dress myself, take care of myself or my daughter, or my house, job, or husband of only 1 year. I faced some dark days following the onset of this affliction. If that was not enough in itself for one to bear, add humiliation on top of this from uncompassionate doctors, I became very depressed and did not want to live anymore. I could not stand the thought of living one more day in that kind of pain and living like a vegetable only being a burden for someone else to care for.

From the bottom to the top is how I got to where I am today. My husband and I had to find ways to cope with this thing that happened to me. I laid most of the time. I could not be on my feet. We go a van to transport me because I could not bend or sit.

I did find an orthopedic surgeon who had been in a car accident a few years before where his neck had been broken, he seemed to take some compassion for the pain I was in and proscribed pain medicine. I had to go almost four months with nothing and the swelling I had was horrendous so he knew something was wrong even though it did not show up as a broken bone. On a scale of 0 meaning no pain, and 10 being the most pain possible, I was living with a 10. this doctor did try some cortizone injections into the coccyx to relieve some of the swelling. Pain wise, it made very little difference.

I had not received an impairment award for the 1985 injury yet. I made every effort to reopen my comp case and because this remained yet to be settled, I had my husband take me to the appointment set up to do the evaluation. When the doctor, who happened to be a christian, doing the evaluations for Workers Compensation Bureau took one look at my condition and the way I looked, compassion came over him. He described me as one who looked as if they came out of a concentration camp. Because of the way people were treated by the Comp Bureau, him being a pain doctor, began to treat me pro-bono with sclerosing injections into the coccyx area. My husband held my hand and for the next twelve months, I received these injections that tell the brain there is an injury to that area and the brain sends natural healers from within the body.

At the end of a year, I was able to be on my feet for a few minutes at a time and the pain level dropped to a 7-8 on a pain scale. It was recommended that I have the coccyx removed because I was still very sick and in a disabling condition. It was then we got all of the pro and cons about having the coccyx removed. I was told that the coccygeal nerve would be severed and I would be in pain from that. My surgery would require the entire coccyx to be removed because the problem originates at the sacrococcygeal joint and part of the sacrum to would be involved. The supporting ligaments to the rectum and bladder would be affected and I would loose ability to control. To say the least, my options did not sound encouraging.

How I made it through all of these years in pain and debilitating capacity is only by the grace of God. How it affected my life, including my family, my husband who had to make the choice to stand by me and face the challenge. This physical condition changed both of our lives completely.

Today, I receive manipulations once per week to try and keep me in place. The sacrum to try and relieve the bladder trouble and the coccyx to try and keep the pain level in check. I have adapted to this affliction. I know more about the low back than most doctors. My husband and I designed pillows to sit on before there was such a thing for sufferers. Having a web site for people with this kind of pain is the best thing there can be for encouragement and emotional support. There were none for me ten years ago, we looked for that. Education on this type of physical affliction is very important to keep doctors informed so that there would be more compassion and ways to treat symptoms. Life can be short but to one who has to live in ungodly pain as that which comes from the coccyx, life can be not worth living, and there has to be hope for these sufferers.

Updated 2004-04-04

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