Any advice much appreciated - The Brain Tumour ...

The Brain Tumour Charity

Any advice much appreciated

Sheepfan profile image
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My grandad is currently in hospital with a tumour in his head. He has been going downhill since christmas, getting slower with his walking and thinking and more recently struggling with swallowing and talking and becoming incontinent. He got a slight infection last week and ended up in hospital with dehydration where he finally got a brain scan and they found the tumour. The surgeon has looked at it but its quite big and not possible to remove (especially in an 82 year old). At the moment its pressing on the area of the brain which controls swallowing and talking.

We have been told that any care is palliative however, we have a decision to make. The surgeon has suggested it would be a good idea to insert a drain into his brain to take away excess fluid and divert it into his abdomen, thus reducing pressure in the brain and hopefully extending his life and (temporarily) improving his quality of life too.

Our local GP also rang tonight and warned us against this, he thinks thathat such a procedure could lead to my grandad being in a lot of pain and discomfort for the rest of his life.

So we have two doctors telling us two different things. My grandad isn't able to make this decision himself so the onus lies on my grandmother who has power of attorney (and somewhat myself too as his main carer and the person my grandmother discusses these things with).

So what we would like to ask is does anyone have any experience with this kind of operation and the side effects from it? We are planning another meeting to discuss it further with the surgeon but any first hand experience to help us make this impossible decision would be much appreciated.

Thankyou

2 Replies
Zhaleh_TBTC profile image
Zhaleh_TBTCAdministrator

Hello and thanks for your post. It sounds like a very difficult situation, especially if you’ve been given conflicting advice. We do have some information on shunts here: thebraintumourcharity.org/b...

If you are considering getting another opinion about the shunt, you’re perfectly entitled to do this.

For more information about how to access a second opinion, please visit our website thebraintumourcharity.org/b...

There is also some more info on the NHS website about ‘choosing where to receive treatment’ here - nhs.uk/common-health-questi... and also about getting a second opinion here - nhs.uk/common-health-questi...

They’ve also produced a patient information leaflet on ‘Patient Choice’ which might help you to decide on where to access a second opinion: nhs.uk/NHSEngland/patient-c...

There is a website called Trustedoctor, which is an online second opinion platform that you can use to access specialists across the world. They explain that their doctors are some of the best experts in the field, based on clinical, academic merits and peer-reviewed track record.

You can securely share your medical records with your chosen doctor and based on the information you provide, they’ll give you a real-time video discussing their opinion about your case. You’ll also receive a written second opinion report at the end of this. The cost involved with this very much depends on the specialist, but you can find out more here: trustedoctor.com.

I hope this helps. Please do reach out to the Support and Information Team if you'd like to talk anything through. The Support Line number is 0808 800 0004, we are open Monday – Friday, between 9 and 5. Alternatively, you can email us on: support@thebraintumourcharity.org.

MimiSpree profile image
MimiSpree

I just want to send you a virtual hug! I my brain tumor challenge must be harder on my family and friends. The only suggestion I may make is to take advantage of caregiver support groups. That simple connection can be so helpful. BIG HUGS!