Having a coxxygectomy today

Sara - sara.smyth@utoronto.ca

Posted 2009-04-26

I wanted to share my personal story about having a coxxygectomy today - I read many of the postings on this site prior to surgery and found them very helpful. I suffered from coxxyx pain for 2 and a half years. Before this, I was a very active woman in my early thirties. Then, one day, in October 2006, I went for a short hike and started feeling terrible pain in my low back and pain shooting down my right leg. It was so painful, I had to pull my car off the road and didn't think I could drive home. I did fall on my tailbone many years ago and I was also born with a congenital birth defect, so I think that the pain can be attributed to either of these things. However, when the pain first came on that day, I had not injured myself in any way and had absolutely no idea what was wrong.

This was the beginning of two and a half years of extreme pain and misery. I tried everything to get rid of the pain. I went to physical therapy, which was useless. I tried accupuncture, which again was unhelpful. I even tried traction with a chiropractor (in fact, I saw numerous chiropractors), to no avail. I also had little success with the doctors I saw. The first orthopedic surgeon I saw insisted I had a problem with my facet joints in my back. He sent me to a pain clinic where an anesthesiologist injected my facet joints, causing immense pain for the next 3 weeks. He told me there was nothing more that could be done. I tried three rounds of cortisone treatments orally, which helped at first but offered little long-term pain relief. I also tried multiple kinds of anti-seizure medication and anti-depressants for the nerve pain, which worked to varying degrees but caused negative side-effects.

I then saw another orthopedic surgeon here in Rochester, NY, Dr. Gordon Whitbeck, who also told me there was nothing he could do for me. In fact, he strongly advised against surgery - although, he insisted that the problem was coming from my lumbar spine not my tailbone. In fact, for most of the past two years, I kept insisting that the pain was NOT coming from my back, but my tailbone, and no one would believe me. Dr. Whitbeck's PA even told me there was no diagnostic imaging to give them a picture of the coxxys!! They sent me for a painful mylogram, which showed nothing helpful. Meanwhile, I kept going to the pain clinic, getting injections in the SI joint (which is where they told me the pain was coming from) - to no avail. I had numerous MRIs and CT scans of the back, which showed nothing. Finally, I convinced him to inject near the coxxys, and OUCH! he hit the spot dead on. They took a guided x-ray picture of the coxxys and saw that it was very crooked and looked like it might be fractured. FINALLY someone believed me.

After 2.5 years of being in immense pain - and this affected EVERY part of my life - e.g. I could no longer hike, ski, kayak, or run like I used to, the only thing that gave mild relief was swimming. Sleeping was painful EVERY night and kept me tossing and turning. Work was painful, whether standing or sitting. Driving was painful, as was sitting on the couch watching TV. In short, I was in pain every single day, all day and night. Nothing provided me with relief. I cried many, many times, wondering why no one would take my pain seriously...I didn't think I could go on living like this. But no one understood the extent of my pain.

Anyway, I finally went to see Dr. Girgis, a neurosurgeon, (see Doctors and specialists in the USA, New York) who sent me for a CT scan of the coxxys. It showed that it was deformed. The next option was to try having it removed - with a 70% success rate. I went for a second opinion from Dr. Maurer, who is supposed to be an expert in this kind of problem, who again dismissed my pain as muscular and told me there was nothing he could do! (In fact, I found him to be very arrogant and rude and would not recommend him to anyone).

After thinking it over, and reading the postings on this site, I opted for surgery with Dr. Girgis and was very afraid of what would happen. I had my surgery today, in fact, and I can walk, sit, sleep and move around with little pain (less than I experienced before). I am extremely optimistic, given that I just had my surgery today. I have no problems moving around or bending down. Dr. Girgis is an excellent surgeon, very attentive and caring, and he said that my tailbone was sticking straight out rather than pointing down - he thinks this was the cause of my pain. I no longer feel the grinding or popping that I was experiencing before and the sharp, stabbing low-back pain is gone, as well as the pain shooting down the leg.

I would encourage EVERYONE with my pain to keep being persistent for as long as it takes to find someone who will listen. I don't know why the medical community is so inclined to dismiss this kind of pain. But it IS REAL and I think that for some people surgery may be the only option.

I will give an update in another few weeks.

Thank you,


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