Surgery scheduled after 11 years of pain
Salma, Sweden
Posted 2021-04-11
My coccyx pain was caused by an impact to my tailbone related to pregnancy nausea. An x-ray and MRI a few weeks after labour - nothing showed up. No fracture or dislocation. Short and dismissive answer was take pain killers and don't sit if you can avoid it. No dynamic MRI in Sweden and they are not for it bizarrely. I was told to go to England on a plane (in covid times- but that's another discussion in Sweden) to get a dynamic MRI - which is so utterly stupefying since I couldn't even sit on the chair for the appointment there!!!
Life during these 11 years was a regular challenge but I dealt with it silently and often very depressed after a plane or car journey etc.
Fast forward to 2020 and corona changed the world. Despite the height adjustable table at work, I was forced to stay home due to covid guidance of social isolation and myself being at higher risk ( yes I have another condition that puts me in a very complex situation).
Sit and work from home for the last year brought relief for family life but the coccyx pain just reached another level - ending up with sick leave and going onto some prescription based meds to take off the edge. I was /am in agony and can't lie on my back or sit at all. My feet hurt from standing. I have to take a cushion between my knees to be able to lie down and sleep. Now taking codeine based painkillers and naproxen or ibuprofen. Had the cortisone shot to my tailbone accompanied with local anaesthetic three weeks ago, which gave the following effect: local anaesthetic gave me a few hours of pain relief in the tailbone; cortisone injection site and ensuing pain put me back on oxynorm first few days and then codeine based paracetamol thereafter many times a day. After 10 days the pain subsided at the site of injection but the tailbone pain was the same and no change there except the first few hours of the local anaesthetic.
Two days ago, I was called by the doctor who ordered the block and he evaluated the post treatment effects. I was quickly referred to Dr. Anton Rasch who has conducted 50 tailbone removals in his time and according to him directly (see Doctors and specialists in Sweden). I met Dr. Rasch and he has recommended surgery of the parts of the coccyx that appear hypermobile or loose. I have to go with that now and can't wait for surgery next Friday.
Update, 2021-04-18
Outcome: 09 April 2021.
Amazing team at RKC Stockholm. General anaesthesia was given after IV antibiotics and other local pain relief to prep me. The operation team were phenomenal and I don't remember anything thereafter.
Woken up by the anaesthestist gently who informed that it was a success and encouraged me to begin walking asap after dizziness etc was over. Had a walking aid for support.
Profound difference in no tailbone moving up and down causing so much pain and discomfort. Ecstatic!
Dr. Anton Rasch was brilliant and so kind. He told me soon post op, that even though the coccyx was itself not damaged, that the ligaments around it were so much that the coccyx wasn't supported in place at all. The only solution was to remove it after years of alternative treatments with temporary relief if not none mostly.
Day 2: Recovering well. Not able to sit nor lie on my back. Pain relief is good - combo of antibiotics, codeine based meds and regular strong paracetamol prescriptions.
Sutures are inside and soluble - don't feel anything yet thankfully. Been told it will dissolve in 3 weeks. Thumbs up so far! A huge bandage is helping anyway. I was told I also received another cortisone to the area for quicker anti inflammatory effect. I also have L5 and sacrum disc hernia- maybe secondary effect and damage after years of chronic pain??
Walking after every meal around 20 mins or so. Walking is the only thing that both is pain free and also key to recovery. A month off work for full rest and recovery on doctors orders.
Hope to return to work from home next month with my new stand up table - instrumental in getting me back to my job soon!
Will keep you posted on progress!
Thank you again for life changing : www.coocyx.org!
:)
Update, 2022-09-25
* 6 months from surgery (October 2021):
Could sit 'normally' for approx 20-30 mins. Had to keep walking/mobile rather than standing. Back at work around July 21 to Jan 2022 at 25%. Standing at desk mostly. Rehab and strong painkillers to get me through the day and night. Very tough time. Vehicle journey not poss for more than 20mins.
* 9 months on from surgery - January 2022.
Improvement in pain and could stand more at work station. Could also sit for about an hour but this would cause a lot of pain after wards and I would have to lie down for the rest of the day with painkillers. Driving back and to work was difficult and affected my pain and stress levels a lot. Pain started to radiate down my left thigh and leg. Spine surgeon has discovered a minor disc hernia at this point at L5S1 region.
* 12 months after surgery.
Could stand and sit with less pain than before but still driving back and forth to work + desk job didn't help. Continued at 50% work hours until August 2022. Anything more wasn't feasible. Started swimming daily and built up good condition in lumbar region. This alleviated my disc hernia symptoms a lot. Coccyx area still sensitive to hard surfaces or sitting positions for longer than couple of hours despite alternating between standing and sitting.
* 15 months after surgery ( July 2022):
Could sit and stand much more with ergonomic settings at work. Car journeys much better. No painkillers anymore. Daily swimming nearly and avoid sitting as much as poss at work.
* 17 months on ...(now)
Working 100% with much much more improvement in general pain levels.. sitting and standing much more easier and can sit on a relatively normal chair without leaning forward. Still need to alternate positions for sitting and standing at work. I go for a walk regularly at work since its the only way I can manage to prevent pain later on. Driving is tough but can endure couple of hours without painkillers.
Summary:
Overall coccyx removal surgery was the best decision in this matter that I made. I don't regret the long recovery time at all. Pain, patience and immobility for 12 months plus was all worth it. Overall I have around 10% pain on a bad day... of what I had prior to surgery
