Brain & Spine Foundation

Intro

Hi everyone,

My name is Graham, I live in sunny Northern Ireland!

My current condition is HYDROCEPHALUS (treated with VP shunt). Ataxia / balance difficulties particularly walking.

All this arising from surgery to remove a benign HAEMANGIOBLASTOMA tumor from my CEREBELLUM back in mid 2012. I've been living with all these conditions since, and am interested to hear similar stories / news from others in the same position, just to hear if I'm missing out with anything.

Cheers.

Graham

6 Replies
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Hi Graham

Thanks so much for joining and being the first non-BSF member to post! As the community grows I am sure there will be people posting useful information to you.

We have a fact sheet on hydrocephalus on our website which you may be aware of already: brainandspine.org.uk/hydroc...

Please feel free also to contact our Helpline should you have any specific questions or concerns about your condition. (Currently closed today however due to the bad weather) brainandspine.org.uk/helpli...

Best wishes,

Aaron

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Good morning Graham I am brand new to the brain and spine foundation however receiving yr message and content am feeling an immediate resonance and inspiration and guided to share the following in accordance the crystal you are feeling healing from this particular crystal is responsible for my name change of Aurora an eaxct year ago when I saw this crystal in a shop that looked like an angel wing when driving home I received the word Aurora hence when googled its features and benefits its name to also relates to Goddess Of the Dawn which is my divine blueprint name.

thankyou for sharing yr current condition I understand this as have a friend who has the same her life to be now trying her best to live in this alternative way which really has its challenges

for me personally my life completely changed in april 2013 when i Blacked out and bumped my head this happened 4 more times the diagnosis by my neurologist was CFS and BURN OUT and told to go and live in the Sun so clueless and have been so unsupported as 5 yrs on and still not able to hit the ground running again although accept this new way of being Gaia and her Crystal kingdom have so nourished me in a way i would never have thought possible.

sending you supportive and nourishing full blue moon blessings i trust this divine timing to have connected us i so appreciate how the universe works in its mysterious ways,

sending love respect and gratitude

Aurora 🌚🌠

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Keep careful watch over shunts as problems can happen which can be fatal as this happened to a friend. If NHS won't as it discriminates & prioritise against disability, not teaching about it in medical schools with Doctors unable to use their intelligence & reason with no hippocratic oaths .

I spend all time trying to get Research through trials re my underlying conditions ? What do they do is blame, ration & punish .You may have to self fund as the Insurance Companies will say you have pre existing conditions? Lovely ?

.

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Hello 'skybluepink':

Thanks for the heads-up......I appreciate it.

Yes - I monitor my condition very carefully....daily in fact. I usually know pretty quickly when things aren't right.

Can I ask what your 'underlying conditions' are?

Do you have hydrocephalus? A shunt?

Thanks to confirm.

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Hi,

I have an underlying spina bifida & abnormal EEG found in research in 1969 at the Royal Free London in relation to chronic utis acute 3 weekly because of neurogenic bladder one ureter too many . Trouble is can't tolerate catheterisation due to what I know now to be lymphedema.

The fact now Doctors/Gov. difficult about antibiotics contributed to heart failure so now get spasticity spasms when not targeted effectively as Appts 3 weekly with Prof in London cut when moved ......

So now going round in circles like a headless chicken with a sense of doom ?!When had Research in first place to save time & resources for them & me .What happened just ignored especially with Online Medical Record & Referrals as have been told I am costing too much.

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Hi 'skybluepink':

I appreciate the explanation......that clarifies things somewhat.

All I can say is, keep positive.

Easier said than done.....for sure !

All The Best.

Graham

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