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.
When was your tumour removed? (latest surgery if had more than one operation)
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 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.
Do you have any of these functional issues?
Are you affected by any of these?
Have your symptoms changed over the time since your surgery?
Do you class yourself as having a disability?
Have you been diagnosed with any related medical conditions since your surgery?
-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.
-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
-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
Do your issues affect you…
-They come and go
-Anxiety is there most of the time
-Hardly ever once every few months if that
What is your age group?
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
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.
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% 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)
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
34% easily overwhelmed
34% no patience/short tempered
32% fight or flight/startle response exaggerated
28% nerve issues in head
26% nerve issues in body
20% sexual dysfunction/loss of libido
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.
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?