Mother of 4 was Diagnosed with a Hemangioblastoma

Amber Spicer was diagnosed with a Central Neurocytoma

Jo Barlow mother of 4 was diagnosed with a Hemangioblastoma in 2016. After going through a frightening experience she has written a book to encourage others going through the same path. I am so grateful to Jo for sharing her story with us and telling us where we can buy her book. 

Jo’s Hemangioblastoma Story

I had been trying to deal with a number of symptoms, feeling dizzy, losing balance, walking into objects (or thinking I will). I felt like I was walking on a boat (looking drunk when sober!). I had a neck pain- sharp shooting pains. pounding headaches at the base of the skull. It would hurt when I turned around too fast.

My headaches gradually increased, including then waking me at night (especially if I laid on my front or tipped my head up). Increased head pain and dizziness when I coughed or strained. I had tingling/numbness in my head and neck.  Squinting to focus straight, vision jolting. I was a mess.

After giving up with various appointments with the GP and only finally being referred to a neurologist on the 3rd time of asking, the neurology appointment came through for over a month’s time. After a week or so of waiting and I was getting worse by the day, I sat on the sofa unable to walk or move far, my husband called my parents who agreed to pay for me to see a private Dr.

Two minutes in the room with this new consultant rheumatologist  (we thought it was possibly damaged in my neck as it started with neck pains and couldn’t turn my head) and him seeing me walk he suggested I needed an MRI due to a rare problem with the brain as I ‘was drunk when not drunk’.

I had a private MRI 2 days later, came home and had lunch and got called back to see the doctor an hour or so later…I knew it wasn’t going to be good news!

On the 22nd April 2016, I was sat down and I saw on the doctor’s computer screen this large white lump on my MRI picture, clearly a tumour in my brain. I was told then the neuroradiologist was 99% sure it was a non-cancerous Hemangioblastoma and could be removed with surgery. I had the tumour removed less than a month later on 18th May 2016.

It’s been an interesting journey, my tumour is supposedly all out and fine, and I am not seen as having any further issues by my neurosurgeon.

I still have daily struggles – fatigue, feeling unbalanced, being uncoordinated, vision issues, a numb head, head pains and soreness, neck tightness, being able to say what I want- certainly I am not able to respond as quickly, speech issues when tired, memory, not being able to multitask now, brain fog- all made worse when I am tired.

But I fully appreciate it could well have been a lot worse. It’s made me appreciate life more.

What has been the toughest challenge for you?

Navigating medical beliefs, especially those that are not right for you and doing anything alternative – where you are just ridiculed. Knowing that when people think you look OK on the outside they assume the inside must be OK too… Overcoming the frustration … of needing sleep, not being able to say what you think, not being able to do things the same as before, of having to change so many plans.

Any advice for people or loved ones that get daunting diagnoses?

  • You can always choose how to respond- it can totally change how you view the situation. If you will remember it as a nightmare, or a challenge.
  • Take time to listen to what ‘you’ want and not just go with what others suggest or fear-based panic.
  • Look at medical alternatives.
  • For loved ones – just hold the person when they need it-  and listen, help them find the answers they need.
  • You can connect with me on my Facebook Page

Tell us about your book

I wrote a book called ‘It’s All In My Head’ and published it myself just 16 months after brain surgery! Hopefully, the book reaches more people and help them go through similar situations without so much fear, pain and anger as I did. Showing honesty and not pretence.

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Having my own website about the experience of a Brain Tumour and Brain Surgery, wasn’t really on my life plans… but here we are anyway! Find out more about my website here

Tell us something about yourself that people probably didn’t know?

That I go to gigs almost every weekend. My husband plays the guitar and my son bass – in the same band!

It’s a good test to practice how I can always choose my feelings – I can find it too loud, irritating, panic and I cannot cope or I can sit back, relax, trust and enjoy the music

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Jo Barlow talks about her Hemangioblastoma
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Jo Barlow talks about her Hemangioblastoma
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