In 2007 (aged 47 ) I noticed my little finger on my right hand hurt also my legs felt like Jelly when walking at night time .
I didn’t do anything at first hoping it would go away , in the back of my mind I was dreading it was MS. Then my hands went cold & painful and the Dr mentioned Raynaud’s disease , so I lived with that .
Nothing changed but I went back several times to the Dr who put me on antidepressants and said I was a hypochondriac !!
After 3 months I still felt the same and went back to the Dr who begrudgingly referred me to a private neurologist ( luckily my husband had private health care with his work ) .
My neurologist first words were” was I a bored housewife and a secret drinker ” I nearly walked out the room . I was prescribed amitriptyline 10 mg for a year things seemed to calm down until the pain crept up again., So I was finally sent for a MRI scan .
I knew something was wrong as I was in the scanner for a very long time, the department was in darkness as I left .
Three days later I had the results, a Spinal tumour . I was very calm, I always knew I had something and it was a relief to know it was not in my head.
Once hearing the diagnosis all I wanted was the tumour to be removed putting all the terrible great risks to the back of my mind .
I went to different surgeons over the next year all having different opinions ,eventually in a London hospital I had surgery.
Once into the spinal chord the surgeon then opened up the dura ,he discovered the spinal tumour was infiltrating into my nerves , so the removal of the tumour would have had terrible consequences, so he took a biopsy , stretched the dura ( allowing space if the tumour grew ) and inserted a titanium rod. ( C3 to T3 ) The results came back and it was a grade two astrocytoma ( possibly a pilocytic astrocytoma , there was a difference in opinion )
After the op wound had healed, I had 6 weeks of radiotherapy .( 50Gy/30#) They made a special mask for me which they screwed on tight to keep me still.
After all this treatment I felt truly exhausted and wondered what my future might be .
Over 15 years which I am truly grateful for and consider myself one of the lucky ones .
I have had numerous therapies to help me , some I had to fight for , some I have paid
for ,some have been free with the NHS and it’s still on going and will be on going for the rest of my life…
- Counselling
- Acupuncture
- Physio
- Pilates
- Massages
- A 3 week pain course
- Pain medication
- BuTrans transdermal patch 20 micrograms
- Duloxetine 30mg
- Pregabalin 100 mg
My oncologist is amazed I am doing so well .sometimes it’s very hard and I only have a certain amount of energy before the pain creeps in .So I always try to pace myself, however life is for living!
Update
I am now nearly 65 so 17 years on living with a spinal tumour.
The oncologist said my spine is like a woman of 30 years older due to radiotherapy .I can still walk ( depending good days / bad days /pain
etc ) & I am determined to do so but my balance is not so good .
Morning’s not so great pain wise, still on the same medication but have
managed not to increase .
I had a nasty fall a couple years ago so have been going to a spinal
physio every week, this has really helped , I do lots of exercises
preventing foot drop and go on the vibration plate , I can’t recommend
this enough.
I am lucky my husband helps and supports me . So I still have a
fulfilling life going out and about,seeing friends ,holidays etc. I have
also learnt to say no if I feel tired and just can’t make it , without
feeling guilty!
2 responses
Hi Liz, I had an astrocytoma C3 to C6 and very interesting to hear how they treated you without actually removing the tumour. They removed mine and I had 6 weeks of radiotherapy (totally forgot until I read then about wearing the same type of mask!). Unfortunately my surgery caused more damage and limited my mobility, but then every operation is different and mine was a regrowth after 10 years. None now 20 years plus since. Good to hear you manage and exercise and have learnt to say no to things when you’re struggling. You can feel guilty, like I can, but then if others had gone through what we have been through then they would totally say the same! It is terrible how very well educated professionals can still say such stupid and cruel things and how would they feel if someone said that to them. MRIs are still the best diagnosis even if you end up paying for it yourself for peace of mind; even if that is not right with our NHS! Take care.
Thanks Paul for your reply and help with setting up the website .I remember chatting to you briefly at one of the meetings in London , a long time ago ! I am glad you are doing ok .
Life can be challenging at times living with a spinal cord tumour , you do very well to cope with work and pain wise with not taking much medication . Did you tumour infiltrate into the nerves or did it have a clear margin so the surgeon could operate?
Sometimes it amazes me just how rare our tumour is or I wonder do people not reach out to the website?