Catherine Somerville, USA - firstname.lastname@example.org
My name is Catherine Somerville I am 66 years old. I am a retired RN and medical sales rep.
I too suffered from chronic coccydynia. I believe my initial injury was in my late 20's when I fell on icy pavement on my butt. I was a registered nurse walking to work on a winters day. The pain was bad initially but abated after a while with NSAIDs. And as nurses do not sit very often while at work I believe this helped.
Many years later in 2012 I fell again and the pain was very much worse, it was constant and unrelenting. It was a constant burning pain similar to constant hemorrhoids that never let up. Pain meds took the edge off but never relieved it. At the same time I was also diagnosed with breast cancer so that took priority for treatment. No one cared that my butt hurt. Finally I was sent to a pain specialist (I would tell anyone newly diagnosed to not take this route) He treated me with spinal blocks, steroid injections, etc. They all helped slightly but they usually never had any relief that lasted longer than a couple of days and again none of them gave real relief .
I was given many narcotics, had to fight the constipation that they caused and was miserable most of the time. Sitting on cushions, donuts, etc was constant.
But I also suffered with pain that got worse with ambulation and movement besides sitting so I was miserable much of the time.
In 2016 my pain changed. It got a little worse. I reported that to my pain specialist who ordered an Xray. This was not good. It came back "normal".
Two months later in September I asked my oncologist to order a CT of the area for a neurosurgeon he had referred me to. The neurosurgeon needed up to date films to decide if I was a candidate for a coccygectomy. That CT revealed that I had two small Metastatic breast cancer bone lesions , one in the sacrum and another in the ileum. Both of my lesions were under 2 cm (under an inch) so my radiation oncologist decided to treat them with radiation, in an attempt to alleviate my pain. The good news is it completely killed the cancer lesions, unfortunately it didn't change the pain.
The oncologist did alter my pain meds and put me on Fentanyl 75 mcg and Dilaudid 2 mg for breakthrough. I never went back to the pain med physician.
Again, I sound like a broken record, it took the edge off but never really relieved the burning pain. I also had to get used to knowing I was dealing with a potentially lethal diagnosis. So I got onto a breast cancer drug that had just been released from a clinical trial and tried to be positive. I still remain cancer free now.
Finally in Spring of 2018 I decided I had nothing to lose. I made another appointment with the neurosurgeon and decided to just have my coccyx removed. I knew the pain couldn't get worse. I had nothing to lose. I wanted my life back. I wanted to be able to enjoy walking and sitting. And it seemed that over time I could do less and less.
Dr David Rosen a wonderful neurosurgeon has a history with other patients with bone mets cancer was still willing to operate. He wasn't sure it would work . He quoted the national statistics as 50/50. But he also said his personal stats were better. In my chart it said he was reluctant to advise for surgery and that I insisted due to the pains interference in my daily life. This was all true.
I got a new up to date CT, the pre-op labs, EKG and primary physician clearance and had Dr Rosen's staff schedule my surgery. My husband installed a bidet to our toilet ( he is awesome & I highly recommend if you are planning to have similar surgery to get yourself a add on bidet)
The surgery was far from my home (1.5 hr drive), I had to leave at 3:30 AM and the ride was long. I was nervous. My husband was a great support.
The surgery itself went well. Very little immediate pain as they use lidocaine during the procedure. Dr Rosen used surgical glue so I had no sutures. Dr Rosen came and spoke to us post op. He said my coccyx was the most unstable he had ever seen.
He felt very positive that my end result would be good. He asked for me to be patient, he reiterated it takes many months to heal but he was really sure I would continue to improve.
I was up walking within hours of the surgery. Walking in the hall that evening. I stayed over 1 night and then rode home on my hip with the carseat reclined. The pain was different. The burning was gone. It was incisional pain and pretty bad pressure. I could tell it was different. It was still very uncomfortable but different.
That was June 15th. Its now about 6 weeks later. Tucks really helped my incision feel better. It closed well within the first few days. I just saw the surgeon and he is happy with my progress.
I still have bad pain when sitting but now I am very comfortable when standing, walking and lying on my side. I can tell the area is healing, pain meds work much better than they used to. And I feel encouraged that I will continue to improve. I am so glad I had the surgery. I just wish I had done it sooner. I long for the ability to sit without a donut.
As for suggestions. I would highly recommend my surgeon, he is young and extremely competent. Dr David Rosen of Orlando Neurosurgery group (see Doctors and specialists in the USA, Florida). And the Florida Hospital in Winter Park (Orlando, FL) was wonderful. What a beautiful well equipped hospital. The staff were excellent too , every single one.
I would also recommend pre-surgery CT Scans in different positions, as an unstable coccyx has much better outcome, it can help you know if it will work.
I will update this in several months. As I am sure I will continue to improve.
I also highly recommend the HomeLife CYLEN orthopedic bamboo memory foam seat and lower back cushion. Its the best one I have found and I have tried four. I got it on Amazon.
Thank you Jon for providing such a great resource on this website.
Note from Jon Miles:
I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.