Surgery then radio & chemotherapy caused a growing cyst in my cervical spinal cord called a syrinx.
this was discovered by oncologist on my post 3 month scan & never mentioned as a possibility as its extremely rare.
not even ENT consultant had heard of it. its now a life long world of pain with no end and should be discussed,
give me more cancer anyday.
I really sympathise sailcol and it must be awful for you but I can't find a hint anywhere online that cancer treatment can be a cause of syrinx; if your team are telling you otherwise then I stand corrected.
Whatever the cause of it I wish you nothing but the best and hope you come through it
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
I’ve found a couple of links to the same article in Clinical Oncology but they are password protected.
Radiotherapy can cause Lhermitte's Syndrome so its other spinal cord damage is understandable. I must say I’d never heard of it.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
it is very very rare and you are usually born with it, or its caused by trauma to the spine by accidents.
radiotherapy can cause this and believe me I would rather have more cancer any day.
look up cervical spinal syrinx pictures and you will get the idea
It's syringomyelia. I'm a vet, Some breeds of dogs are prone to it so I am familiar with it. So sorry you are having to cope with it. I hope you find some doctor, maybe, who knows about this and can help you. Maybe it's operable?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
The truth is vets know more about this than even Nuro consultants.
On the syringomyelia chat rooms it's the same story just like mine.
Nuro consultant dismisses it as not big enough to cause pain dispite thousands of testimonials of pain pain pain.
The annoying thing is I have wasted so much of the nhs time complaining about bone, arm, shoulder pain without any answers when I know it's the syringomyelia
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