Eventually going to have surgery

Lithia - isophecles@yahoo.com

Posted 2011-03-06

I wanted to share my personal story, and update it as time goes by. My story, in chronological order....

Early 1998, I fell down ten concrete stairs, bouncing on my tailbone on each one. I had no health insurance, so went to a local clinic. they diagnosed me with a broken tailbone, and suggested anti-inflammatory medicines and a donut pillow. Told me that it might be six months before I would feel better. The prognosis was spot on, and after six months I forgot that I had a tailbone.

Fast forward to January 2008. I lost about 50 lbs of weight and was down to the same weight when I fell in 1998.... and my tailbone started to hurt. The more weight I lost, the more painful my tailbone became.

By December 2008, I had lost another 50 lbs, and my tailbone pain was excruciating. During a car drive to my mother-in-laws at Christmas (2000 miles round trip) I knew that I could not continue to ignore how horrible the pain had become. All the advice that I had received that it would pass didn't seem to be the case for me.

In early January 2009, I saw an orthopedic doctor, who felt that it was better if I saw his orthopedic pain specialist. The pain specialist told me on the very first visit that I MUST understand that he NEVER refers for a coccygectomy. If that was all I wanted, I should seek another specialist. At that point, I simply wanted relief, and surgery was scary. We decided to do a cortisone injection.

The injection was painful for several weeks, but at the end of week 3 I felt an approximate 15% improvement. My pain specialist believed that it could take up to three injections before full relief would be felt. I was willing to try again. The next injection was MUCH more painful that the prior one, but after three weeks my pain diminished tremendously. I was down to 85% improvement, and with the strategic use of coccyx pillows, I had my life back. While I did not forget about my tailbone, I did not worry about it either.

Then 11 months after the injection, my tailbone started to hurt again. by the end of May 2010, I was back to extreme pain.

I went back to my pain specialist, who felt that another coccyx injection might work for me. I got that, but this resulted in no noticeable improvement. He suggested another injection, so I did that, and again, no noticeable improvement.

At this point my pain specialist ordered an MRI. The MRI showed a lot of edema and swelling of my fatty tissues around my coccyx, as well as edema and signs of repetitive trauma in the marrow of my largest coccyx segment. The pain specialist said that while he normally does not recommend coccygectomy, he felt that this was the best plan in my particular situation. I was re-traumatizing my tailbone every time I sat down. He could not eliminate pain for a tailbone that continues to be traumatized. He referred me to a surgeon.

I went to the surgeon, who thought that my pain specialist was stupid for wasting my time. The surgeon said that there was NO medical reason to EVER remove the tailbone, and of course he wouldn't do it. At this point I had a vacation planned, so I made plans to see the PA for the pain specialist when we got back from vacation.

In December 2010, while on vacation, I had a severe fall, landing right on my tailbone. The agony was excruciating. I did not see a doctor because I felt as though there was very little chance they would do anything other than tell me to live with the pain.

It was less than a week after my fall that I went back to the pain specialist. She didn't feel that an x-ray of my newly damaged coccyx was necessary, and prescribed me neurontin to eliminate the nerve pain... which seemed ridiculous as ... even if I HAD nerve pain.... my recent injury would certainly hide any therapeutic effect of the medicine. The neurontin took away my equilibrium. I fell five times in ten days of trying to use it. I ditched it and again got an appointment with the PA (the pain doc was hard to get in to see). This time, a little frustrated with the lack of interaction with the pain specialist, I called in advance and asked them to PLEASE consult with the pain doc before my visit, so that we would have a plan instead of more runarounds.

The PA told me that the pain doc thought that a radiofrequency ablation was a good idea, and we should schedule the test injection right away. I was willing to give it a shot, since surgery seemed a remote possibility.

The pain doctor, who had NOT been consulted, was shocked to see me in the procedure room. As far as he knew, I was off getting my tailbone removed. He was embarrassed to hear that the spinal surgeon he'd sent me to had sent me packing. He did NOT feel that a radiofrequency ablation was the correct choice for me, and for the issues I was having. He STILL felt that coccygectomy was the best plan for me. He and I had a heart to heart, there in the procedure room, about what the best plan was. He decided to flood the connection between the sacrum and coccyx with lidocaine to see if that eliminated my pain. I was to call the next day with the results of the test.... did I get pain free? how much? how Long? and if there was an elimination of the pain, he would personally find me a surgeon in Arizona who WOULD perform a coccygectomy on me.

The test was glorious. 6 hours of utter pain free existence. I could sit like a normal human being. (but the next two weeks my pain was quite elevated in reaction to the lidocaine).

A week later, the pain doctor hooked me up with a new surgeon. Dr. Paul Gause in Scottsdale AZ. Dr. Gause seems to have some reservations about the RISKS of the surgery, and the possible outcomes, but he seemed to be very upfront about it. He will be doing a coccygectomy on March 9th.

Update, 2011-03-20

On Wednesday, the 9th of March, I went in for my coccygectomy. The surgeon apparently tried to put in a nerve block but for some reason this was unsuccessful. He also flooded the region with local anaesthetic in addition to the general anaesthetic. He anticipated that I would have minimal pain for the first few days postop, but due to the failure of the epidural/nerve block, I woke up in excruciating pain. The first recovery room nurse was very attentive, and gave me six doses of pain medicine over the course of an hour and a half, bringing my pain from a level of 10 down to a level of 6. At that point they switched recovery room nurses to one who was inept and incompetent. She ignored me for the next hour and a half, leaving my pain escalating out of control. She finally administered some morphine but failed to ascertain that the IV was not kinked. This resulted in a morphine burn to my hand and no pain relief to my back (but incredible pain as my veins were burned!) She also accidentally yanked on my catheter, almost pulling it free, and left me naked in full view of any visitors to the region.

I was taken to my hospital room, where my first nurse started to inspect my neck, looking for the surgical wound. She was so disgusted to discover the incision was on my rear that her subsequent treatment of me was very sub-par. I was supposed to be given IV pain medicine in addition to a pain pump, however she neglected to set this up and refused to give me any other pain medicine. She refused to listen to any question I had, or indeed any answer to any question she posed, speaking over me each time. Her excuse was that she had other patients and didn't have time for me.

I was glad when she left at 7 am the next morning, but knew she would be back that night. The doctor wanted me to be in the hospital two nights so that I could get specialized care for my wound in the first 48 hours.

Around midday the day after my surgery my catheter was removed and the physical therapist visited with me and we went over good low-back posture and care, which I'd learned earlier in my life when I herniated a lumbar disk. After that she helped me to sit up. I have to say that I was very concerned about this... would I be able to sit? My pain had been incredibly bad up until 7 am that morning when the change of shift brought me a competent nurse who gave me decent pain medicine. I was UTTERLY DELIGHTED when I first sat to discover that I had NO increased pain to my posterior! I had my first glimmer of hope that this surgery was going to work! The physical therapist got me to my feet and we used a walker and took a couple of turns around the medical ward. While I was unsteady with the pain medicine, and did have continued pain in my posterior, I had no increased pain to be sitting, standing, or walking! My hope then, and now, is that once the surgical pain subsides, I might be one of those individuals with the best surgical success!

I went for another walk with the physical therapist that afternoon, and shortly thereafter passed gas and was finally allowed oral pain medicines. For the first time in 36 hours I was down to a pain level in the 2 to 3 range.

The second night I had the same nurse again, who had no desire to work with a patient with a surgical wound on her posterior. This became clear when I woke up in the night and discovered that I had soiled myself with my first bowel movement. I panicked because of fear of wound infection, and fears that I'd somehow become incontinent. The nurse brought me to the restroom and handed me a washcloth and told me to clean myself. She did this several times in the night. I had an uneasy night, frightened that my wound was contaminated and worried about messing myself.

The surgeon saw me the next morning and checked my wound dressing. He declared himself satisfied with how airtight it was (glued shut) and told me it was just the amount of stool softeners he'd given me.

I was glad to be released that evening, especially after several more successful trips to the restroom where I discovered I do indeed still have control of my bowels.

I've been home five days, and taking the pain medicine as often as possible. The pain is still much more than I anticipated, but it is still very focal to my tailbone region and not exacerbated by movement in any way. I can sit for limited periods of time, on my coccyx pillow. It is uncomfortable, but not at all in the way it was pre-op. The most painful is to try to lie on my back, which I don't do.

I will see the surgeon in a week, and my hope is to return to work on April 4th. If the extreme pain subsides, I see no reason I will be limited in going back to work. I still have fear, of course, that the surgical pain is my new reality, but I know it's too soon to expect to feel totally better. While the doctor sent me home with a walker, I am not needing to use it at all.

A final note... my incision was closed with internal stitches, but glued externally. There is NO bruising whatsoever. I don't anticipate that I'll have any scar at all. It's hard to even find the incision, even if it is three inches long.

~Lithia

scar of glued skin

It's 2 weeks postop right now, and I've been back to see the doctor. He's very pleased with my recovery. I think overall he's amazed at how quickly the incision has healed. Now all I have to do is build up my strength and get off the pain meds, which I am still taking too frequently. I'm down to one pain pill every 5 hours instead of every 3 hours, hoping to cut it down to a minimum by the time I go back to work. We'll see how that works.

The incision is mostly healed up, the picture below is after 2 weeks.

I got very tired during the 100 mile round trip visit to the surgeon. We included a half hour shopping expedition for a few staples that we couldn't do without and that I couldn't send my husband to the store for, he'd inevitably get the wrong thing. By the end of the shopping expedition I felt like I was carrying a ton of bricks on my spine and pain was radiating down both legs. I'm assuming that my sciatic nerve was annoyed by inflammation. We're using some NSAID Flector patches to try to cut back on the inflammation even though I'm technically allergic to NSAIDS. The hope is that a non-oral method of use, combined with prilosec will keep ulcer formation down or minimized.

I am still planning to return to work April 4th, a little less than one month after my surgery. My only limitations so far are sitting for any length of time, and it appears, standing for any length of time.

scar at 2 weeks

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