I am a 37 yr male living in the UK that would like to share his story.
In 2010 after having some muscular muscle spasms in my back that persisted after all the efforts of an osteopath I was referred to an orthopaedic specialist who upon initial diagnosis told me I had a damaged coccyx and that although it was in poor shape and they could not fix it they would help me stop it getting worse, having done a lot of physical activity I thought maybe it was one of the many falls I've had.
After a session with a physio who showed me some core muscle...
I am a 37 yr male living in the UK that would like to share his story.
In 2010 after having some muscular muscle spasms in my back that persisted after all the efforts of an osteopath I was referred to an orthopaedic specialist who upon initial diagnosis told me I had a damaged coccyx and that although it was in poor shape and they could not fix it they would help me stop it getting worse, having done a lot of physical activity I thought maybe it was one of the many falls I've had.
After a session with a physio who showed me some core muscle exercises I was glad to see that the spasms almost stopped completely and I felt so much better for it
Forward 5 months and due to the incompetence of a certain secretary messages from the specialist mentioned above finally were conveyed and I was asked to return to the clinic.
Being completely honest I thought this was just a follow up only to be told that on my first consultation something had been missed and another scan was necessary, the specialist said it wasn't something they had looked for and needed to be sure. Another scan this time with a marker showed a tumour on my coccyx and the specialist told me it could be a sack of fat or a Chordoma, he warned me not to jump to any conclusions or research the matter on line until we had conformation. Of course that meant going straight on line to check and what I saw and read about chordoma shocked me, I thought it can't and won't be this and just waited for my biopsy procedure a week later
Of course you can guess what my results came back as, I think I knew given the pain of the biopsy and the sound of grinding he made that this was no sack of fat.
I can't tell you how hard this was to know, having a beautiful wife and young son at home and what I thought would be many more years to come. All I can say is thank god for the counsellor that I met and for my wife putting up with how sorry I felt for myself
What followed was truly the beginning of my ordeal.
It started with various surgeons calling me asking me to allow them to operate, by now of course I realised how rare this was and how limited the experience dealing with it was. So I did my research and went with a surgeon who had the most UK exposure. Next came the surgery which I was told best case would be 2-3 weeks in bed and worst case would an infection which would be manageable.
Well surgery was a success the tumour was an early interception and only a little larger than a golf ball, 9 days and I was back home recovering.
Or so I thought, I began to have discharge and a lot of it, 2-3 times a day ranging from a couple ounces to five or six each time mixed with blood smelling horrible. Finally going to my local A&E who told me to go back to the hospital where I had my operation immediately as I was at severe risk, I later found out my white blood cell was through the roof.
Back at the original hospital my wound had to be reopened and cleaned out and I emerged this time with an open wound and a vac pump. 18 days in hospital to recover from my infection and pumped so full of antibiotics I could have supplied a small town. Then of course came the time at home to lie there waiting for a dressing change being hardly able to walk and there was always the pain.
Interestingly I had read about how addictive and severe effects of the opiat medicationI was given. So I had made it my mission to reduce the dosage and bear the pain as not to live with the side effects later. I remember my GP asking me how I was and how the pain was and when I told him about my halving the dosage he just said my boy just take the drugs we can sort out any dependencies later. I still chose to go with less and still my moods and thoughts were incoherent and dark
So 2-3 weeks became 3 months out of action, by now I had daily trips to the surgery with more mobility to get my dressings changed. My first trip back into London was to meet my oncologist and discuss radiation, which was eventually after a few hick ups was granted as proton beam therapy in Switzerland. Just 2 months after surgery I was fortunate to go there meet the team and plan my treatment. 2 months after that I was back for 3 months of daily sessions and that was not easy but by now I had been able to get my fitness and strength back up and you would never guess anything was wrong with me
The one side effect that plagued me the most post surgery and since has been the difficulty I have passing stools. The surgery left me with very limited anus mobility shall we call it which can really hinder that process and causes a lot of pain sometimes.
So upon returning from my proton beam I had tried to get done normality back into my life, until 2 months later and without warning I started to have anal bleeding, more like a gush of it at one go which was horrific to see. Straight to A&E to be told that possibly as a side effect of radiation I may need my colon cauterising so we did that too, twice!
In for a penny I guess and there it was almost 8 months and countless visits to doctors, hospitals and clinics I was able to start again
One thing I haven't mentioned above was that I had been able through my counselling to remain level headed choosing to live a full life instead of one in fear. The way I see it do I want my son growing up seeing daddy always stressed about his back or like all other daddies being able to spend quality time together. When that day comes and I'm lying in that bed waiting to go do I want to wonder about what I could have done or smile about the things I did do. I chose the latter on both counts and today I try and live by that mantra daily though it's not easy
I hope my story helps anyone who finds them self facing this obscure and unyielding condition
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