My entire day is spent trying to get some pain relief

Gwen -

Original posting, 2004-01-04:

My name is Gwen, and I am a 38 year old female. 15 years ago I had my first child and was told that my tailbone had been broken during childbirth. I had pain when sitting on hard surfaces, but a year later I was fine. For 12 years I had no problems and never gave my tailbone break another thought. Then about two and a half years ago, I started having pain in my lower back into my buttocks. I noticed that my tailbone protruded and that it was tender to the touch. I went to my doctor who put me on muscle relaxers and told me to take it easy and not do any lifting. The muscle relaxers did nothing for the pain and in fact I just continued to get worse.

By the time I was able to convince my doctors two years later that I needed an MRI, I was in serious pain. I could no longer do my normal daily activities such as housework, cooking, etc. The pain was constant, it even woke me up at night. The results of the MRI showed a protruded L-5 S-1 disc. At that point, the doctors started taking me seriously and gave me a prescription for pain medicine and scheduled me for epidural injections. While I was waiting to get in for the first injection, I went to physical therapy, saw a chiropractor, used a T.E.N.S. unit and took many different medications including Neurontin, Amitryptiline and oral steroids. I had no pain relief from any of these things. I was put on strong anti-inflammatories, but had a severe allergic reaction and ended up in the hospital.

At that point I still believed the disc was causing the pain, even though the pain was further down. I received my first injection in November 2003, and after the soreness wore off I did feel better....for two weeks. I had my second injection 3 weeks later but did not have the same relief I had from the first. During the second injection, the nurse was asking the Clinical Anesthesiologist about my condition, and the doctor replied that I had coccydynia. No one had ever told me. I still have not had my third injection, because I've been sick and they don't want to risk me getting spinal meningitis.

At this point, my entire day is spent trying to get some pain relief. Ice packs help, sometimes very hot baths help, the pain medicine helps some, but nothing helps for more than a little while. I have become severely depressed and until I found this website, I felt like there was no hope of ever having a normal life again. I was tiny to begin with and have lost another 15 pounds because I have no appetite. I can't do anything with my kids because everything I do hurts. I have to take pain meds every four hours and I have no doubt that my body has become dependent on them. I have lost friends because I never leave the house anymore. But thanks to Jon Miles and this terrific website, I now feel like there might be an end to this long hard battle I have fought. Because of this site, I now know that surgery is an option, my doctor had never told me. I have a name and an explanation for what's going on, and that's more than I've had for the last two and a half years.

If my next injection does not bring long term relief, I think my doctor might want to discuss surgery. Some of what I've read here has me concerned about whether it will help or not. I am with an HMO called Kaiser Permanente and I have to use their doctors, which means I can't go out and look for a surgeon with experience doing coccygectomies. I guess I'll just have to wait and see what happens. If anyone has any advice about anything else I can do to relieve the pain, please let me know. Thanks.

Update, 2004-12-12:

Well, it's been almost a year since the last time I was here, and even though I've come a long way I still have so far to go. In April my doctor put me on Methadone and allowed me to continue the Vicodin for breakthrough pain. The Methadone was a godsend, it really helped the pain. A few weeks later she did another caudal epidural and when it kicked in, the combination of the injection and medication brought my pain level down to a 2-3, it was wonderful! In August I finally made it through the series of three caudal epidural injections that my doctor wanted to do. Unfortunately each subsequent injection was less and less effective, so I'm no longer getting the relief that I did at first.

I had an appointment last week to discuss my options with my doctor. In my mind, I was ready for surgery, however I was in for a big letdown. The only thing she could recommend at this point was a spinal stimulator. While I've heard that they work for some people, being as young as I am I'm not really thrilled about having a battery pack in my stomach, I wanted a better solution. I brought up the idea of surgery and her response to me was that she did not think I'd be able to find a surgeon that would agree to do it. She said she knew of no one in our state who did coxxygectomies. She did agree to refer me to a neurosurgeon, but didn't give me much hope that anything would come of it.

Because of that, I am back at this site looking for information. There are no doctors on the list that are in my state, but I have discussed this with my husband and if I need to travel I will. The closest surgeon I can find is in Provo, Utah. I plan on contacting him to see if I can have a consult with him. Other than that, I don't have any other ideas for finding a surgeon. I'm wondering if I should contact all the spine doctors within my state to see if any of them perform coxxygectomies.

If anyone has any other ideas, I would very much appreciate it. Also, I don't know if my insurance will cover me going out of state, does anyone have any information about how insurance companies work in that regard?

I welcome any and all suggestions or advice. At this point I feel like I need to have the surgery done. I have exhausted all other avenues and I can't continue to let this pain destroy my life. Nothing has been the same in my family since this all started, and I have to have some hope that things will improve in the future.

I hope you are all doing well and are as pain-free as possible!

Thank you

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