My name is Martin & I would like to share my story which entailed a long pathway through misdiagnosis to correct diagnosis in the hope that it may help others undergoing this experience
Having always been fit and active requiring very little in the way of health intervention during my life, it came a a surprise when in February 2011 (aged 69 yrs) whilst out walking the dog, I suddenly experienced a sharp pain in my lower back which caused me to stop walking for a few minutes.
I took anti inflammatory drugs for 2 weeks with no effect - so made...
My name is Martin & I would like to share my story which entailed a long pathway through misdiagnosis to correct diagnosis in the hope that it may help others undergoing this experience
Having always been fit and active requiring very little in the way of health intervention during my life, it came a a surprise when in February 2011 (aged 69 yrs) whilst out walking the dog, I suddenly experienced a sharp pain in my lower back which caused me to stop walking for a few minutes.
I took anti inflammatory drugs for 2 weeks with no effect - so made an appointment to see my GP who diagnosed a pulled muscle and prescribed more medication - which had no effect. He then sent me for an X-Ray which showed nothing untoward and I was then referred to an orthopaedic specialist practitioner at the local hospital who diagnosed a partially prolapsed disc and prescribed a course of physiotherapy which didn’t help much - this was followed with a 4 week course of advanced physiotherapy (supposedly to strengthen my spine) which was in fact just circuit training with back exercises included. This made things a whole lot worse although I completed the course, returned to the GP & was prescribed stronger analgesics and told to see how things went! All this took a number of months.
In August 2011 My wife & I went on a cruise to Norway and during the last part of the cruise, one night I collapsed with the most severe pain I had experienced. I was was transferred to the ships medical facility and put on an IV Paracetamol drip & given strong analgesics. The ship docked in Southampton the following day & I was transferred home and advised to see my GP.
My wife then attended the GP ( different one) with me and insisted on a second opinion with a spinal surgeon and an appointment was made for us to see MR B. W. 2 days later at a private hospital. What a change we experienced, after a thorough examination, I had an MRI scan whilst we were there & he telephoned a week later with the news that I had a tumour which appeared to be a heamangioma. He saw me the following week and explained that whilst this tumour was benign, surgery was not recommended because of the risk of extensive hemorrhage & he started me on a drug which although licensed for heart problems had been found to be beneficial in reducing the size of these tumours. A further MRI 3 months later showed there had in fact been a reduction and the tumour had shrunk, the pain was also well controlled and not as intense.
After 6 months (Feb 2012) he gave the all clear for us to travel abroad for a holiday. Disaster struck on the second day when my legs collapsed and I was unable to walk. Unable to get an early flight home, we hired a wheelchair & stuck it out for a week.
The pain quickly became unbearable despite a number of pain killers including large doses of Morphine and a further MRI showed the tumour was growing again and pressing on the spinal chord nerves. I was admitted to Salford Royal NHS Trust for surgery on March 13th 2012 - still under the impression this was a haemangioma and with warnings that I may well bleed to death on the table! - But, the pain was so excruciating, I would have agreed to anything.
I had excision of L3 & 4, + 90% of the tumour - the remaining 10% was left as it was wrapped around my spinal chord. Mr W then inserted two titanium rods to hold up the spine, surrounded the area with a mesh cage which was filled with cadaver bone chippings. 13 hours later I woke up in recovery and after a further 3 hours was transferred to ICU to recover.
The following morning I realised I was unable to feel/move my left leg and it transpired that the nerve had been bruised/caught under a retractor in theatre for a number of hours and I would have to wait and see if feeling returned.
Two days later I was informed that the tumour was not in fact a heamangioma but something very strange which looked suspicious and probably malignant and we would have to await the lab results for identification of the type of tumour. Meanwhile, as spinal tumours were usually secondary to others, I would be scanned again looking for a primary elsewhere. These scans revealed no other tumours in my body.
I remained in hospital for 3 weeks, recovering and having physo, some feeling started to return to my leg, but I was unable to walk without crutches and was advised it would take up to 6 months to recover strength in the leg.
During that time it was by the Grace of God that a young female oncologist (Dr T) who visited Salford Royal Hospital from The Christie Hospital ( World Renowned Cancer Hospital in Manchester) weekly to investigate any spinal tumours occurring in urology patients (I had previously had a benign enlarged prostate operated on), who, after looking at my notes/scans, realised it may be a chordoma - she was correct and my after care then transferred to her at the Christie Hospital.
This was a very frightening time, as we knew nothing about chordoma and my wife was desperately searching the web for information
It took 6 months for me to walk unaided with a stick and to recover my strength. During that time my wife was providing all my physical & emotional care 24/7 and, although she had many years of nursing experience, felt at times overwhelmed. My GP provided fantastic support to both of us, visiting me twice weekly initially, then weekly; he gave us his mobile phone number in case morphine and gabapentin doses needed titrating and was happy to liaise with the hospitals to get appointments changed or speeded up.
Also during this time, Dr T submitted a bid for funding for me to travel abroad to undergo Proton Beam Therapy but unfortunately this was rejected as I had too much metalwork in my back hiding the remaining tumour. Therefore the only option available to me was radiotherapy. I started this in November 2012 for 30 essions which were completed on December 2012.
During 2013 the nerve pain in my leg subsided, my strength increased to a stage where I was walking unaided and undertaking my normal lifestyle once again. 2 years on, I walk approximately 3 miles per day, I drive and even cut the grass again! I am off all medication and my only remaining symptom is an intermittent ache down my left thigh.
I see my surgeon annually for check ups and my oncologist 6 monthly following my MRI scans which to date fortunately have shown no regrowth or change since the one post op in 2012. Dr T has agreed that I will continue with 6 monthly MRI scans for 5 years and then annual scans for a further 5 years.
I feel very fortunate that despite the pysical and emotional turmoil I have undergone that my chordoma was lumbar, that despite initial misdiagnosis & frustration with the Primary Care element of the health service - my care since then has shown how our National Health Service is 1st class. My needs have been well managed by a wonderful oncologist and, that through the Chordoma Foundation & Chordoma UK we are in contact with many wonderful people who provided support and friendship over the last 3 years and without who’s advice we would not have coped so well - thank you all.
Meanwhile, we get on with our lives and take every month as it comes.
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