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? 

 

.

You're looking really well...

 

"You're looking really well, glad to see it. 😊"

It's a funny phrase that.  

 

As the judgement is already there - I think you look well, so you must be. I often think it is also when they switch off to the fact you have struggles.... just because my face, or more importantly, my hair scrubs up OK with a bit of attention! 😁

"You can't have a brain injury - you don't look like you do, you can do things right now."

"You can't have anxiety - you are confident, you look fit, healthy and attractive."

"You can't have depression - you chat and laugh with everyone."

Yet, if they had seen me just a couple of hours before they might have seen me...

 ...crying my heart out, curled up in my bed, wanting to stop the never ending chatter and fear programs going round and round my head. 

... having a full blown panic attack over a feeling I had, be it something as 'silly' as feeling full after eating or a micro second pain.

... freaking out and bawling my eyes out as a (C)PTSD memory has triggered me. An ambulance siren, a bleeping sound speeding up (even from a reversing car!), one of them damn blue surgical masks, or simply my vision blurring or feeling off balance for a bit. (Easy to do, when you need glasses for both near and far distance🙄)

... not able to go out alone for fear of what might happen to me, and no body will care or see, even if it's something serious. The shaking body after, if I have gone out and felt anxious, or the tears when I can't find my words and feel stupid. 

... panicking when stuck in a traffic jam, even if I have family with me, as I feel trapped and can't get out. No where to go.

... collapsing into bed. Unable to keep going as my brain has switched off, I'm struggling to talk, can't think clearly and just need sleep to recharge. 

... exhausted from doing the household chores, walking the dog round the park, cooking dinner.

... trying something creative and getting upset and frustrated as it looks like a child has done it, a mixture of poor hand control, no coordination and bad vision.

...chopping my finger when trying to cut veg, dropping the knife, the veggies, the oil lid, knocking the bottle over... After another, after another, after another. The insane frustration of a body that won't cooperate.

...feeling I'm nothing but a burden. Done nothing all day, but still can't work out how to cook the dinner.
 

Afraid to live. Afraid to die. Just wanting to sleep and it all go away. 💔

 

Does it mean that I can't have severe crippling anxiety at times, just because I enjoy talking to other people? 🤔

 

I find sitting in silence when alone but others are near anxiety provoking... I did my time of doing this knowing another person was struggling but not saying a word. It stresses me. So I need you to talk to me, to stop this fear based chatter starting up. Instead of wondering what you are thinking and finding the negative. I am the person that will talk to you on the tube... I can't stay silent. The more the energy is off, or I feel stressed... the more I talk. 🤐

Maybe I also want you to approve of me? See me as a person? Rather than this non entity that no one cares about... as the system certainly makes you feel invisible. 🫣😔

Not being the one that frequently feels useless as she can't work.  Being able to do something useful for a short time is SO needed, a feeling of worth for a short while. 

The tears are so closely hidden behind that smile. Yet, only those that really pay attention ever know they are there. 

But, please dont judge, and #bekind  💖🙏

#itsallinmyhead
#braintumoursurvivor
#invisibleillness
#invisibledisability
#cptsd
#anxietyawareness
#DepressionIsNotAJoke 

..

Trauma. Why don't Doctor's listen?

I mean I don't have a good track record of Dr's listening to me. They all but dismissed my brain tumour as anxiety and stress and offered me Diazepam. 🙄

Decades ago they told me the antibiotics I was taking hadn't triggered my bad gut issues, only for me to find in a medical book they certainly were linked - and when I stopped them the symptoms eased significantly. I've also been told over the years that other issues were not linked that were later proved correct. With each of my kids I was told in labour my opinion of my own body and instincts were wrong, that I wasn't near birth...and each time I was again proved right. With one child I actually said 'I'm waiting in the car park if they don't admit me as I know I need to be where I'm giving birth'... despite them saying I wasn't even in labour. He was born 40 minutes later. 😬 The two following home births they told me again I would be ages, yet both were born within a couple of hours from the first twinge. With the youngest the home birth midwife even left! She arrived back less than an hour later, moaning she had just put her dinner on, to basically catch the baby. 🤭

So when in 2019, I finally got a neuropsychology appointment for what I'd asked my neurosurgeon for help with - in testing my cognitive function and if my hand, vision, speech or coordination could be improved? - I was thinking I would get somewhere at last. It had only taken over 3 years since my surgery, which was long enough.

But... I saw this neuropsychologist, and while she was vaguely understanding and helpful at the start, once she started typing my history into her computer and realised I had previously been diagnosed with anxiety and depression her attitude changed. She then implied it was just this reoccurring again, and basically what did I expect as I had refused to take anti depressants for it. I was just causing my own problems!!! 🤬

 

I was livid. 

 

Yes I know I have had issues in the past  - because of TRAUMA!!! I had a boyfriend drown in an accident, a week after telling me he would be dead within a week 🤯 and past abuse that had caught up with me. But at the time they happened I was told to basically forget about my thoughts, never allowed to actually get help with processing them. 

 

However, in 2016 on dealing with the trauma of being told I was fine, when I wasn't,  then urgent brain surgery,  feeling dizzy and not with it for weeks... this subsequent trauma had brought to the surface all my past traumas.

 

So with this information, and the fact she thought I seemed OK at my appointment, she decided I didn't need any cognitive assessments that day as planned, and thought I had Functional Neurological Disorder -FND (where there is no physical cause for the issues, although they agree the symptoms are real) & I just needed psychiatric help.

 

Now if she had spoken to me and explained she thought that psychiatry sessions would help me - that they would help address the traumas, explained why she thought I had FND rather than brain injury from either the hydrocephalus, my tumour or the surgery; understood and accepted my reasons for refusing antidepressants and also said she would still test me for the cognitive assessments either as planned, or in time, I could have accepted it easier.  

 

But she didn't, she basically insulted me, laughed at me and then dismissed me.

 

Anyway.. a lot of fuck ups and time later (not helped by the covid bollocks of them stopping all but urgent medical treatment) I finally saw a neuropsychiatrist last year, had regular follow up psychiatry sessions (although again stopping with more silly covid restrictions over Christmas) and while he helped loads in that he validated my feelings that had previously been dismissed, reminded me of techniques to help with stress and to not feel so bad about myself when I simply have times I can't find the correct words and was a lovely, helpful person. We agreed that my hands, vision, speech etc hadn't changed much.

Then after going to a booked face to face appointment with the main neuropsychiatrist, I got to the hospital to find out it was changed to a phone conversation! (And they never notified me of the change in plans) So I sat in a hospital room to talk to her on the phone -  a 2 1/2  hour round trip to use the phone! 🙄

 

BUT.... she basically agreed the same. Yes, my psychology sessions had improved my being. (Why can't they understand that just someone listening and caring improves your being, much less an 'official' psychiatrist who confirmed that my feelings were right and that I had been treated badly... it wasn't just my failings or weakness.) Yet as my physical issues hadn't much changed she would be referring me back to the clinical neuropsychologist in the main part of the hospital's neurology department - that does assessments etc - rather than just the psychology I had been having in the mental health building on the outside of the main hospital. (This is a whole other conversation as to why one is hidden in the back of the hospital grounds?!😬) I now have my diagnoses changed to 'an element of FND', as well as 'delayed grief/adjustment disorder/PTSD component'.  

Could this not just be..?

 

 'Still struggling at times from the trauma of being ignored and then needing a life saving, but life changing, surgery'

Yet with this confirmation, I honestly didn't know whether to laugh, cry or scream.

 

 "Why don't you fucking listen to your patients?" 

 

 

No, it couldn't have been that my brain got injured!? 

 

 

... that having hydrocephalus before the op, needing my surgery to be brought forward as urgent due to this issue, taking a 3cm lump out of my brain along with the intermingled brain tissue, 6 hours of brain surgery, having 40 staples in my scalp to hold it all together, or that I was told would kill me if they didn't treat soon ... 

 

 

Of course these wouldn't cause any fucking issues would they? 🤯 

It had to all be me and my psychological issues, as I have been diagnosed with anxiety and depression in the past... 🤬

 

 

 

 

 

Then literally the day I was told that I am being referred back I saw this video from Dr Jessica Taylor on how women with mental health disorders are flagged up on their medical records. This might explain a lot.

 

Is this why over the years they have ignored me, tried to drug me and blame things on any other problem than what it is?

 

Trauma. 

 

 

Be it emotional trauma from situations that I couldn't cope with, ones I had tried to mentally block out so I could keep functioning, or physical trauma in that my brain had been actually opened up and pulled apart! 

 

Yet for the second time is as many months I have been given confirmation that I was right all along...

 

 

I have just got my letter for my assessment again in May, 2.5 years from the last time I was supposed to get this done. 

 

Before someone decided to not listen to me.

 

 

You'd think they'd listen as I know when the issues started and what I feel about them.

 

It would save a LOT of time.

 

 

I also have bought Dr Jessica Taylor's new book  Sexy But Psycho. I'm looking forwards to reading it.

 

"Angry, opinionated, mouthy, aggressive, hysterical, mad, disordered, crazy, psycho, delusional, borderline, hormonal . . . Women have long been pathologized, locked up and medicated for not conforming to whichever norms or stereotypes are expected of them in that time and space. Sexy But Psycho is a challenging and uncomfortable book which seeks to explore the way professionals and society at large pathologize and sexualise women and girls.

Utilising decades of research, real case studies and new data from her own work, Dr Taylor's book will critically analyse the way we label women with personality disorders. Why are women and girls pathologized for being angry about oppression and abuse? How have so many women been duped into believing that they are mentally ill, for having normal and natural reactions to their experiences? Sexy But Psycho argues that there is a specific purpose to convincing women and girls that they are mentally ill, as the world avoids addressing violence against women and their centuries of ignored trauma."