2.5 years of coccyx pain - post surgery update (Do it, worth it!)
Sameera R, Delhi, India
Posted 2018-03-18
Hello Jon Miles (thank you for creating this website) and my fellow Coccyx-Pain sufferers,
Age - 22 years (onset) 24 (current age)
Background story:
I started experiencing coccyx pain in November 2015. In 6-9 months the pain was excruciating. It was agony to walk, sit and lay down in bed. I was experiencing "electric shock" like sensations, burning pain, skin colour change (red) and a change in my body temperature as well as nausea.
November 2015 - August 2016 : Pain. Went to numerous doctors, including a GI Specialist, Gynae, Psychiatrist (due to family pressure) - you get the drift. In August 2016, I came across coccyx.org and basically diagnosed myself (although I still wasn't sure because I did not recall a fall). However, in the previous year, I had lost weight, was sitting with bad posture for 12-13 hours daily due to work and study at University. Pain level 9.5/10. Note: Still able to travel and drive till June 2016. I would experience an 'electric shock' sensation during car rides and from getting up from a seated position.
August 2016 - January 2017: Tried exercise, walking, optimistic 'pep talk', read about the condition and almost fell for Dr. Sarno's mind-body crap. (I'm sorry, it just made me lose time.) Pain level 9.5/10 (By this time, I was also into full blown depression, anxiety and fear.) Note: Unable to walk, drive or travel. Started using cushion. Still experience 'electric shock' pain.
January 25th, 2017: First steroid injection (lidocaine) - immediate relief for 1-2 hours. Pain level 8.5/10. Still experience 'electric-shock' like pain.
March 7, 2017: Ganglion Impar Block at a Pain Management clinic. Within 48 hours, my pain was down to 4/10. There was also a difference now- I no longer felt a burning pain but rather a dull ache and my bone was more prominently felt by me. I was able to sit for 5-6 hours and travel in buses, cars etc. Needed to get up to relieve pressure occasionally. But now I felt the 'knife' in my body, it was horrible- I felt stabbing sensations.
29 March, 2017: Got a sit/stand Xray after 1.5 years of pain. This was done by Dr. Rajveer Singh in Bangalore (see Doctors and specialists in India). The X-Ray showed an anterior dislocation to my coccyx. He's a great physiotherapist but I was not comfortable with manipulation since my Impar Block was working well. Key Note- DISLOCATION!!!!!! Bone had moved from place.
January 14, 2018: Consulted with Dr. Arvind Kulkarni - a great Spine + Ortho surgeon at Bombay Hospital, India (see Doctors and specialists in India). He said I had two options: either continue with injections every year till I die or to excise the coccyx. He was calm, friendly and seemed very assured about this operation. I asked him couple of questions (concerning the wound, infection, success rate etc.) He said the success rate was 80% and that his technique would not allow any complications in that area. At this point of time, after 2.5 years of pain, the surgical excision was a logical decision for me. Side Note- I had a huge number of people, including my close family members dissuade me from the operation but it was something that I had to act upon, I was tired of the shit load of information around me and the lack of action on my part.
Surgery and current life
February 17th, 2018 - My surgery happened in the morning and stayed in the hospital for 3 more days. I took stool softeners, pain was manageable. When I woke up, I felt pain from the cut of the wound (and an inability to lie on my back). I quickly turned to my side and basically slept the first 24 hours off. No complications, no infection.
March 18th, 2018- Tomorrow I complete one month after my surgery. A few important pointers: (a) I can stand, bend, do squats, walk for an hour and am 90% pain free. (b) I'm slowly increasing my sitting time. I can sit for 30-40 minutes after which I need to get up and walk around for a bit. I've realised there's soreness, general wound pain and muscle tightness (for which I'll take physiotherapy 3 months from now). Everyday I am healing. (c) I still sleep on my stomach because I am a very cautious person. And would likely take precautions up till 6 months. I am not on any pain-medication. I try not to gain weight and to eat light especially in the night.
A few personal pointers- I feel that I wasted around 6-8 months (or possibly more) in trying to convince myself to try injections, nerve blocks and finally surgery. I wasted time on homeopathy, yoga, exercise, reading Dr. Sarno's 'mind-body' syndrome. I started keeping a diary/journal in 2017 and what drove me to action was my constant focus on being "honest" and "authentic" with myself. I was living in high levels of pain and was not living much. I will be patient and post updates at 3 months, 6 months, 9 months, 12 months and so on. I would do the surgery, sooner - Instead of waiting for 2.5 years, I would have done in the first 6-9 months of pain. I will attach pictures of my X-Ray since the dislocation is very obvious.
Update, 2019-03-23
My surgery happened in Mumbai, Maharashtra at 'Bombay Hospital'. My surgeon was Dr. Arvind Kulkarni. My surgery date was February 17, 2018. (I'll remember it for the rest of my life!). I had coccyx pain from January 2016 - 2018. (Nearly 2 years before surgery, my pain level peaked 2-3 months post surgery, but it was also because of my own depression/negativity. I am now 25 years old. While this accident took 3 years of my adult life, I am optimistic about the future.
Now, the important points-
- I am pain free. 100 %. My operation happened when I was 24. Now I am 25.
- I am working full time, Mon-Saturday, sitting at office desk 8 hours per day.
- I feel 'discomfort' probably as a result of neuropathy/nerve damage.
- My pain never exceeds 2/10 pain scale on the worst days. (Again it is not the pain of surgery). I just quickly get up, the pain vanishes. The previous 'sit-to-stand' pain has 100% gone, so I feel that my coccyx was loose within my body/displaced).
- I have noticed Muscle Soreness - due to weather conditions such as 'too much of cold', during long car journeys (exceeding 3-4 hours). I recently did a 7 hour + road trip from Delhi to Jaipur. No problems, but I definitely need to 'get rest' or relax after long car rides.
- Period pain, affects me physically : feel very painful/achy down in that area. But I think that is a different system located near the coccygeal area. I take a 'Meftal Spaz' tablet and that reduces my pain from 9/10 to 2/10.
I would do the surgery, all over again and sooner and not wait for 2 years. But I also feel that since this operation is risky, waiting for 1.5 years is ideal. My surgeon was also very confident and skilled, and his presence made me feel calm and confident to go through with the operation.
In hindsight, I think I know how I injured myself. I do not think it was a weight issue in my case, neither was it a posture issue (in academic/work life).
In January 2015, I was skateboarding with a Bulgarian skateboarding instructor who was around my age (21) that time. He was confident that I could skateboard, without holding his hand. Once he let go, the board shifted from beneath my feet (while it was in motion) and I fell straight at a 90 degree angle to the ground. I believe, my coccyx got fractured. During the same period (Jan 2015) my vitamin D levels was less than < 0 , so I believe my body also was under an anxious/panic mode. Fast forward to 2016 and I was not able to function, daily pain at level 9.8/10.
It was a direct cause-and-effect situation.
I hope to send you a photo of my coccyx, a good quality photo. Maybe you can have a look and tell me what it looks like? (hyper mobile, fractured or simply weird!!). I will also attach a post-surgery Xray - hopefully it looks good to all!! :)
Thank you for creating the website and quite literally saving my life. Back in 2016, during the worst days of my life, I would read and re-read your website, stories from everywhere and also 'research' on the links provided. Once I was convinced that I needed the surgery, I quickly acted by speaking with my father (who believed, that a solution was possible).
