Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

Sarah's Story

In December 2013 I was diagnosed with having a “suspected” juvenile pilocytic astrocytoma” or “Ependymoma” located at my T4/T5, it fills the entire cord and space. Currently I am a watch and wait patient and very happy with my consultant.

I’ve already waited one year and had my follow up MRI only August 2014 where it showed no growth and after getting copies of the discs, I can assure myself there is no growth because I have studied them with a magnifying glass (!), my surgeon classifies this as a very benign growth likely to have been present since birth and is more than likely an Astrocytoma and has seen and operated on one similar but larger! I have not had a biopsy as not worth it and if/when I get the operation I will only have up to 95% removed if possible due to not wanting to leave the spinal cord unstable.

I am not without worsening neurological symptoms however, and these are under the close watchful eye of my surgeon. His advice is clearly why risk further deficits at this point when you are fully functional and will only intervene when it means a patient will benefit from his surgery.

My symptoms have been present since my teenage years but like many of us I had a blame card for my symptoms, car crash when I was younger, keen horse rider, got a kick from a horse and no pain no gain attitude…  my key life symptoms were a burning back pain across my thoracic region after walking too far or doing too much and tingles in left foot when horse riding 3 hours plus, ‘wooshing’ in my ears when getting up too quick. Gradually as time went on I used to blame this silly tingle for cutting my circulation when sitting up on a horse and doing too much. I also used to get quite a painful hip when cold weather struck and shooting pains in left leg calf and shinbone area, drs were baffled.

I had a failed pregnancy in August 2010, after this I kept being very sick and bad where I found that I had a tiny gallstone, in March 2011 after 2 years of excessive bouts of stomach related pain and sickness and left leg pain finally they found a tiny gall stone and blamed it all on that! Even today I still get referred pain to my stomach area at times.

My symptoms worsened during a successful pregnancy (April 2011-Jan2012) when I was told I had pelvic girdle pain and given a belt support to wear… other than this I had a magnificent pregnancy (the best I felt ever), and continued to be active albeit a weak left leg. I went in to labour fine, however I required an epidural and it was this moment that changed everything, I lost the use of my left leg completely during labour and for some 3 months that followed I needed to learn to walk again due to dragging my leg, electric shocks left of neck out at the knee and knee would give way every now and again, I got back to horse riding which helped massively perhaps due to core muscles being stimulated?

I went back and forth to the GP and got sent to a vascular clinic and a pain relief clinic which neither were related to my neurological issues I presented them with. The pain relief clinic sent me for an MRI of my lumber area as my symptoms were weak hip, then six months later I returned as no real improvement and I ended up suggesting that I had MS or a brain tumour and was sent November 2013 for a full MRI scan…

I got a little flyer saying I had a hospital appointment… here we go I thought this is serious! So I attended on the 18th December 2013, and there I was told the devastating news that I had a “tumour” I got asked to walk up and down the corridor and to run? I could do both albeit with a weak left side and could jump up and down just about on the left leg without it collapsing, there I explained I get a cold left leg, back ache, numb big toe which I was told these are nothing to worry about but symptomatic of my tumour, go live my life and see them in a year…. I was told however that these tumours can have progesterone receptors and so this is why I would feel worse in the luteal phase of the month and also if I were to fall pregnant again it would carry the risk of tumour growth.

In August 9 months after my first MRI scan and after 9months of worry, being scared, finding all the new and old symptoms I brought my MRI forward as I couldn’t bare to wait any longer, and the result is no growth! I am active still carry out my sports 6 days out of seven (my choice) and stay as active as I can, but also rest when I need it as sometimes my body cant do what my brain wants it to do!

I’ve made some healthy life style changes and took up weekly CBT therapy, self help books like “feel the fear and do it anyway” and see an osteopath as this helps with my “hyper sensitive symptahetic nervous system” which helps so much with the anxiety and exhaustion which this leaves us feeling so deflated and tired, I do not take any pain meds or anxiety meds and am coping well by remaining positive and sharing and receiving knowledge which is key to getting through the emotional torment and happy for anyone to contact me anytime.

Will keep this updated in the event I move to post operative stages.