Brain tumour-

[Pop1234]

Hello I am 57 i have been diagnosed with a brain tumour a year and half ago, I'm stage 1, i have had two ops to remove it, they couldn't get it all out so still have some in me. its affected my hearing and my balance, I've lost a lot of weight been cutting carbs and following a keto based diet, what next for me? Recovery is going well, next MRI is in two weeks to see if its grown. anyone else been through similar?

[RogerCMerriman]

Not myself traumatic brain injury here but others I’ve met have a similar story, it may be helpful to find your local Headway Branch to see folks face to face? As useful as this place has been, I found going to the meetings really helped.

[DTBI]

I’m a 53yr old chap who had a heavy TBI 6yrs ago. Your mentality sounds strong. Being as positive as possible is always helpful, and as suggested above turn to local Headway if you need personal chats with people who face similar challenges. Good luck with your recovery👍🏻

[Matt2584]

Hi Pop,

I was diagnosed with a brain tumour (astrocytoma) located on the brain stem in 1996 when I was 11 years old. Spent 3 weeks in hospital, and a couple of weeks after that was my 12th birthday.

2 years later, in 98m I was diagnosed with a second brain tumour which was located next to the first.

Where was your tumour located?

Obviously in the brain but what part?

Brain tumours, as well as other cancers, seem to be to be a lot more common now and I would not be surprised at all if diet plays a massive role in the reason why.

I used to have a terrible diet when I was a kid. A pure junk food diet that consisted of a lot of sugary foods, fizzy drinks and hardly any fruit or veg.

Now the tables have turned and I eat less sugary foods now, no fizzy drinks at all and eat much more fruit and veg and feel a lot better for it.

So when you say you are following a keto diet, I am glad to hear that.

What was your diet like before you were diagnosed?

[Pop1234 in reply to Matt2584]

High matt you have been through a lot like me I was 21 when I had a brain haemorrhage part of my treatment was I had radiotherapy back 1983 which can cause problem later on in life I THINK?. My tumour was Meningioma behind my left ear after my first opp I recovered really well always had Ballance issues have got better my 2nd opp was over 5 hours took a lot more out of me they took fat from my belly to stick me together, have recovered well never going to be perfect but have leant to adapt, as for food your right as we get older we need to watch what we eat I have cut the main crabs and I do feel a lot better and I don't miss the crap food well only sometimes? Onward n upward

[Matt2584 in reply to Pop1234]

I have been through a lot and what I mentioned was brief.

The plan was to have 3 operations in 1996.

1 to have a shunt installed to drain away Cerebral Spinal Fluid, Because of the location of my tumour, it was blocking the CSF and this was building up and up in my head and causing pressure to my brain.

2 was to have the tumour removed.

3, was to have the shunt removed as I wouldn’t need it no more.

But alas, it did not go according to plan.

The first op went by ok, I had the shunt installed and still have it now.

The second op is where it went all Pete Tong.

Because the tumour was at the back of my head, there is obviously a mass of nerves in the way and so the op was very delicate. Surgeons couldn’t just cut the whole thing out in one go.

Surgeons removed some of the tumour before the rest had calcified. This meant it was continuously blocking the flow of CSF and I would have to keep the shunt in at all times.

Obviously the third op never went ahead.

So the tumour was mostly inactive now apart from a small amount which surgeons could not get to.

I had a further op in 97 on the active piece of the tumour.

98 was when I had the 2nd tumour (it was actually a cyst but doctors told me that it was the equivalent of a tumour) and I had radiotherapy on that.

The radiotherapy was supposed to shrink the tumour until gone but scans were showing that the tumour was throbbing/pulsing and because of this pulsing it was causing pressure to the bottom part of the brain, the cerebellum, which is the part of the brain responsible for balance.

This explained why my balance was terrible at this stage of my life.

I had a further op in 99 to try to help with my balance but this did not work.

So in 2000 I had an op on both tumours. The cyst was split in half, fluid removed and the active part original tumour was operated on to.

Since there, I had no problems... until 2005.

In 2005 I had a cyst in my back next to my spine. Not sure if this was related to my tumours or not. Personally, I think it is related. Either it is or it was my diet which was still bad then.

So anyway, it was a simple op. Open me up, scoop it out, stitch me up.

But that’s just it, I was stitched up. During the back op the surgeon “somehow” dislodged my shunt. So I had an emergency op to replace it.

Back in hospital in 2006 cos the replacement shunt had basically fallen apart and had another shunt put in.

In 2008 this shunt had malfunctioned/blocked up so I had a further op.

In 2010 I had another op on the shunt then later had an emergency op cos during the first op I had a haemorrhage and blood got into the shunt.

And since then is when I started turning my diet around for the better and I have had no visits to the hospital since.

I do not trust the pharmaceutical industry at all and believe that they are all out for money.

I don’t believe chemo or radiotherapy is the solution.

I know I have had radiotherapy and if I didn’t have radio or any of my surgeries then I wouldn’t be here now but if I was continuing to follow my crap diet as usual I think I would have had recurring ops.

From what I have learnt from alternative media, chemo attacks good cells as well as bad and although cancer patients who have had chemo may live after the op, you usually find that the cancer comes back years later but it comes back with a vengeance. It did with 2 of my friends who have now passed :(.

The crap food, the processed food from the supermarkets and the like will be laced with sugars, carcinogens and all sorts of chemicals and sugar, refined sugar (the white stuff) is addictive.

The saying “A moment on the lips, a lifetime on the hips” rings a bell here.

When you are on a diet that consists of refined sugar (biscuits, store bought cake, cheap chocolate) then you are addicted to sugar and you will dislike the taste of any fruits and veg/REAL food.

When I first started ditching sugary foods, I didn’t really enjoy the taste of veg that much. But I found a Nutribullet/blender really helped.

I make veggie p-based smoothies a lot and I find adding fruit to it as well makes it more palatable.

I can drink a veggie smoothie with no fruit now :).

It can be difficult over xmas though cos I can’t really help but eat sugary foods then :).

[RecoveringH]

Your new best friend may well be turmeric. This study explains why.

new.hindawi.com/journals/om...

Sorry for the crude description that is coming. Colour your poo orange. When you eat enough turmeric, vegetables in turmeric sauce for lunch, curry with turmeric for dinner, your poo turns orange. For a short period of time like a week, keep it orange. Then reassess. See if the diet suits you. make any adjustments. If so, then do another orange week. To get a good sauce, use coconut butter to thicken and coconut oil.

Or for a more expensive and comprehensive approach, purchase supplements of Turmeric; Omega-3 Fish Oil; Chlorella & Spirulina and Vitamin C.

I have heard about cases of different types of cancer being beaten by using these supplements, eating a nutritious clean diet and eating turmeric as much as you can!

The keto diet has meat. Excess meat attaches to the inner lining of the intestines and can rot creating a weak intestinal environment in an already "up against it" brain injured body.

By eating just enough protein 30g in each meal (studies have shown eating more in any one meal often results in non-absorption), we optimise our digestion which in turn supports brain lymphatic activity coupled with gentle exercise and good sleep and plenty of fluids (water, herbal teas, squeezed lemon in water - to keep the liver clean and efficient).

Nothing wrong with plain old beans and vegetables and rice. And turmeric!

Beans have excellent sources of nutrition and protein.

Butter beans for choline, selenium, tyrosine.

Adzuki beans for zinc, tyrosine and vit A.

Black turtle beans for vit K, zinc, folate, calcium, magnesium, tryptophan, threonine, lysine, tyrosine, histidine (good for allergies), pantothenic acid (vitB5).

Kidney beans for calcium, vit C.

Pinto beans for vit E and vit K.

I eat meat once per week and fish once per week, and the rest beans and vegetables. This works for me. It is my experience that good diet is essential in brain injury healing.

Best wishes