Cerebellum Survey Results

Here are the results from the cerebellum survey I asked on my Hemangioblastoma Brain Tumour group on Facebook.The results are only from those who had a cerebellar tumour (not from those with a tumour elsewhere) and the subsequent surgery to remove it.

When I copied these results 54 people had responded.

Q1

When was your tumour removed? (latest surgery if had more than one operation)

Q2

Do you struggle with these issues?

The answers to 'other' were:

-Headache and occasional vision blurring.
-Overwhelm, then essentially mental “shut down” when faced with more than 1 or 2 things (even  simple tasks) to do at a time.
-Balance.
-Balance to some extent - e.g. can't turn head quickly from left to right and vertigo-like sensations (whether up high or not)
-Horizontal vertigo randomly
-Phantosmia - I smell burning sometimes, cigarettes, or more commonly like candles. Balance is technically fine in “tests” by doc/physio but I can wobble all over the place some days.
-Inability to multitask.
-Cognitive issues - problems reading faces, hearing what's being spoken.
-Tinnitus, eyesight issues, tingling down the arms, pain passing from my forehead along my head to my neck, loss of movement
-Very poor balance and mobility issues. Need to use a walking aid when outside my home.
-Hyperacussis (increased sensitivity to sound and a low tolerance for environmental noise), anxiety.
-Right hand tremor/
-Hard to hear with multiple sources of sound when tired.

 

Q3

Do you have any of these functional issues?

Q4

Are you affected by any of these?

Q5

Have your symptoms changed over the time since your surgery?

Q6

Do you class yourself as having a disability?

Q7

Have you been diagnosed with any related medical conditions since your surgery?

Other :

-The neurologist doesn't think the memory issues would be related to the tumor, different part of the brain, but his science is wrong because the whole body holds memory, not just one place. Eventually science will catch up to itself.
-Von Hippel-Lindau Syndrome (VHL)
-Stroke, Holmes Tremor
-Cerebrospinal fluid (CSF) issues
-Functional Neurological Disorder (FND), Post-traumatic stress disorder (PTSD)
-Additional tumor on spine
-Hemorrhage 1 week post op
-VHL
-Under-active thyroid/ peripheral neuropathy/ fibromyalgia/
-Recurrence of tumour in cerebellum and additional tumours on brain stem and spine
-Short term memory loss
-Spinal stenosis (probably caused by imbalance issues), Lynch Syndrome (MSH6 gene)
-Holmes tremor. New tumour has grown
-Surgery worsened compressed nerve issues in my neck from positioning on the surgery table
-Hydrocephalus
-Meningioma 

 

Q8

Do your issues affect you…

Other:

-They come and go
-Anxiety is there most of the time
-Hardly ever once every few months if that 

 

Q9

Are you?

Q10

What is your age group?

Q11

In general, are your issues…

My first thought on seeing these results was 

'Its not just me!', 

combined with almost instantly with the sadness and anger of 

'Why dont they believe us?'

 

From Q 2:

73% struggle with fatigue.

49% have brain fog

49% have issues with concentration and attention

45% have memory issues

43% struggle to find the correct words

37% forgetful

35% confusion/ decreased clarity of thought

24% struggle to type/write words

23% say the wrong words 

17% spelling has got worse

Although from my experience of the various medical professionals - only fatigue and, maybe, brain fog are related to the tumour/cerebellum, the rest have nothing to do with it! Categorically saying to me speech issues such as these have nothing to do with the cerebellum! Therefore, blaming my cognitive issues on 'Functional' disorders instead, and definitely implying its my thoughts about them and nothing to do with my tumour, surgery or cerebellar damage.

Yet the lowest score here is 17%, saying their spelling has also got worse. Something when I have explained to various neuro doctors has changed for me - that I now have to really think and spell out words, and get the tense of words such as 'send' and 'sent' constantly wrong, rather than just instantly write or say them as I did before - I have never received more than a look of total derision and a 'it's not linked' for,

Only 7% say they dont have any of these issues.

 

From Q3:

55% balance issues/ataxia

54% feel dizzy/wobbly (these top 2 are accepted by doctors as linked to cerebellum)

47% sensitive to sounds/too much conversation (this Dr's imply is unusual for the cerebellum)

32% weakness

32% whole body coordination/clumsy

30% hand control (I have been told by all the neuro Dr's that my hand issues are nothing to do with my tumour/surgery, although a physiotherapist said my issues were clearly stemming from my neck or brain - she couldn't test nerve points past my neck to distinguish which)

28% tremor/twitching/shaking

23% blurry vision  (Again, vision issues are supposedly not linked by the neurologists or ophthalmologists I've seen, despite several also having some of these same vision problems at times?!)

23% vision that changes

20% sensitive to lights/flickering

20%  swallowing issues (again been told it's not linked)

15% double vision 

4% nystagmus /eyes flicker

13% have none

Q4

63% Anxiety

34% easily overwhelmed

34% depression

34% no patience/short tempered

32% fight or flight/startle response exaggerated

28% nerve issues in head

26% nerve issues in body

24% nausea

20% sexual dysfunction/loss of libido

19% insomnia

19% motion sickness 

4% psychiatric issues

8% have none 

Some of these the Dr's acknowledge may be an issue, but more as a result of trauma and the stress than a possibility it could be related to the cerebellum. (Which it could be? but how to Dr's know if we've never even been asked?) Yet only 8% of us have none of these concerns.

 

Q11

61% worse when tired

50% worse when stressed

43% worse when anxious

28% variable for no clear reason

20% constantly the same 

Again, the amount of times I have been looked at like I am lying, or strongly exaggerating at the best, when I explain that my symptoms can change vastly. Yet clearly it's not just me!

'One day I barely notice, the next I can barely cope with them.' 

Also I feel I'm not believed that when they see me they think I seem 'fine' and so they don't see an issue. I am sure the only reason I am normally OK when there is that I get a burst of adrenaline on the 'stress' of being back at the hospital and never being believed - which actually boosts my thoughts and responses. Plus, that also explains why I feel 'burnt out' shortly afterwards and almost fall asleep or can't talk properly when I get home. 

 

Things need to change. 

 

Cerebellum studies have been done since the 90's with Jeremy Schmahmann's pioneering work on the cerebellum and cognition and changed the belief of how the cerebellum works... 

... isn't it about times things start to change within the actual medical profession too? 

 

.

Cerebellum - it isn't just about balance!

I got told at some point after my surgery that having a part of my cerebellum removed is the best area of the brain to be removed as "it doesn't really cause any issues".

Now while I fully accept that it would be far better than many areas, removing a 3cm area of brain and the required surgery certainly doesn't mean you will always have absolutely no issues!

Many a time since I gave spoken to a GP, or even a neuro specialist about the cerebellum's links with cognitive function, speech, anxiety or depression and they have looked at me blankly. They never say, 'I don't think it's linked to the area of the cerebellum your tumour was' or say anything to imply that I have understood it incorrectly - instead they clearly don't have a clue what I'm even talking about!

 

They sometimes say 'it mainly controls balance', then add 'you don't seem that affected with this'. But I've also been told "I've not heard of that link before." 

 

 

Are they the actual experts? 

Do doctors, even brain specialists, really know more than their patients?

 

Or could actually asking the patients 

 

'What things do you struggle with now?'

 

actually help both the medical profession and us patients out?!!

 

Even on Wikipedia it says this about Cerebellar Cognitive Affective Syndrome (CCAS)

"They reported that patients with injury isolated to the cerebellum may demonstrate distractibility, hyperactivity, impulsiveness, disinhibition, anxiety, ritualistic and stereotypical behaviors, illogical thought and lack of empathy, aggression, irritability, ruminative and obsessive behaviors, dysphoria and depression, tactile defensiveness and sensory overload, apathy, childlike behavior, and inability to comprehend social boundaries and assign ulterior motives"

This article 'The mysterious, multifaceted cerebellum', being a really easy to read and informative, the end of it saying.  

 

"What’s clear, however, is that the cerebellum can no longer be ignored — and that its connections throughout the brain and contributions to brain function may be much broader than scientists had initially imagined."

 

From - https://knowablemagazine.org/article/mind/2020/what-does-the-cerebellum-do

 

There are also these, basic but interesting, links (that every neuro doctor should know!) about cerebellum damage and its side effects.

Cerebellum Brain Damage: What Causes It & How Rehabilitation Works 

"Of note, the cerebellum also helps to regulate other visual functions, such as the vestibulo-ocular reflex (VOR). The VOR is what allows you to continue seeing a stable picture even when while you are moving around. These visual functions may also be affected by cerebellum brain damage."

This interests me as before I knew about my tumour, I complained to the GP saying my vision felt like I was looking through a video - moving up and down as I walked. Plus I have never felt my visual perception is back to normal afterwards, I can turn my head and lose balance and so can't look backwards easily, often feeling things are just not fully still around me. But again, I just get looked at like I spoke to an alien if I discuss it with a Dr!
 

Plus this article that everyone who has has, or knows someone who has had a brain injury should read.

Dealing with Sensory Overload After Brain Injury

Many of these approaches I naturally realised helped me long before I read this, and no doctor or therapist has yet to ask me, let alone help with them!

Also, as I had hydrocephalus before my operation, all parts of my brain must have been struggling beforehand. How can they know if being in this state for weeks caused damage or not? It drives me insane when they say its nothing to do with my surgery and yet the issues only started just AFTER it. Many a time I have said, it could have been the tumour, the hydrocephalus, the surgery, the swelling after... and I'm not blaming the hospital or staff in any way - but please acknowledge there is a problem! 

I also set up a survey for my Hemangioblastoma brain tumour group - asking those who had cerebellar tumours to list their current issues. The results are exactly what I have been saying for years and are so very similar, yet we are all ignored (and I cried when I read them) 

I will try and publish the results in another blog post soon x

And please search my previous blog posts on the cerebellum and its side effects for me. https://benignbraintumour.blogspot.com/search/label/Cerebellum

Missing area in cerebellum

The outside is missing!

Showing how messed up my neck is too!

Empty Inside

How can I explain to you,

What I can't even understand myself.

That I just feel empty inside.

Or that a part of me feels broken.

Just following the motions in living,

but half of me just feels dead.

I don't want to die, 

just not too sure I want to live either.

Well at least not like this.

I feel useless.

Worthless as I am.

Constantly a burden to you all.

When I'm tired, I can't think.

I can't cope with my body.

Don't want the constant struggle.

Aches, pains, brain fog, fatigue, 

always fucking hurting or needing to rest.

Having to take 5 minutes.

Trying to switch off.

Yet.

Never feeling rested.

Not able to fully relax.

My body pounding or exhausted.

Tingling, itching, sore or just plain numb.

That invisible itch in my skull.

constantly reminding me of that scene in Harry Potter -  

when Voldemort is inside him and he's just writhing from another's evil soul...

I have to be distracted to be happy.

Get myself out of my head. 

Switch off my negative feelings. 

But what the fuck can switch them off?

 

Every damn thing I enjoy I can only do for so long.

Before I hurt more, ache, feel dizzy, feel tired, can't think, can't type, 

forget what I'm doing while doing it.

Before someone notices that I'm not talking properly. 

That I can't pronounce something, 

Or said the wrong word.

Start dropping things.

My hands forgetting how to work correctly.

Can't see right.

Blurriness descending.

Hand eye coordination gone wrong.

Unable to move out the way.

 

While my head starts buzzing and pulling, 

Like its twisting inside.

Feeling all its weaknesses instantly. 

The physical and the mental scars start to breakdown.

And sleep tries to smother me.

Again...

 

Go to sleep.

Start again later.

Again.

Again.

Is it me just being weak?

Do I need to just get on with it?

Yet, if I try, I just fail.

I just don't know what to do.

The world is overwhelming. 

I don't know where to start.

There's just so much I need to do.

That I want to do.

But I just can't remember what. 

 

So I do nothing,

just scroll on my phone.

Until something reminds me.

Or I just want to cry.

Sink into the bedsheets forever.

Forever. 

Their tests say I'm fine

Because adrenaline hits well when faced with a challenge.

Something to make my life worthwhile.

A meaning.

Yet they tell me, 'Average, you're fine'.

No I'm not, 

And just maybe, just fucking maybe, 

have they thought this can't speak straight dipshit of a person was actually over average before?

That's,why I'm struggling now. 

Not that I've always been average,

but because my brain has changed.

Maybe that's why I can see through the bullshit?

The constant, drip feeding of the nudge team.

The 'stop you thinking' media.

The glaringly obvious manipulation and agendas.

The lies, the puppets, the distractions.

I'm blind to it all and see clearly at the same time.

And it hurts, it hurts so fucking much, that when they say to jump, others just say 'how high'.

Bending over to lose their rights, and their health, and their freedom... forever.

That of their children.

People I love.

I don't want to be part of that.

It breaks me to think of it.

I don't want to know.

I can't agree.

Exhausted even more from the pain of that division.

My babies...

I try and make plans. 

It works for a while.

Then exhaustion returns and I have to stop.

For a day, or a week.

How much is emotional and how much is physical I don't know? 

But I can't cope.

And after, I'm so behind on the daily chores that extras just aren't possible.

So when, or if, I ever catch up.

(When others help out)

I've just forgotten what I was doing...

Over and over.

Books are half read.

Clothes are half sewn.

Jewellery never finished.

The crochet needle still with wool on it.

Letters never written.

Survey results never published.

Blog posts in draft.

So many to do lists.

Their reminders silenced long ago.

And still the floor needs vacuuming, the washing putting on and the rubbish going to the tip!!

But it's too much.

So I just don't start.

And once again.

Tears just roll down my face. 

As I'm sitting there blankly.

Empty inside.

Until a customer knocks at our door,

And I wipe my damp face, put on a smile, and they never even know.

It feels like an act.

It's not me.

 

Or we go out.

Escape the reality 

Drowning in natures beauty instead.

Silence.

So healing.

So, so healing...

At gigs, I'm a different person.

The hidden me appears.

I even look different. 

I know I do.

I can feel it.

The switch has flipped.

I chat to anyone, I enjoy talking with others, laughing, 

Helping them, 

Being of use.

Being needed.

Being appreciated.

On top of it all for a while. 

Hyper focused and organised.

Content.

Happy.

Even joyous!

 

And then we get home.

The energy vampire in this house haunts me.

Tiredness returns.

My brain starts switching off.

My face changes.

A part of me disappears again.

It's been used up.

Washed away with the make up.

And the crap part returns.

Back to the me that I don't want to exist.

 

Empty.

 

Empty inside.

.