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? 

 

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My interview with Aunty M Brain Tumours

Six months ago I had an interview with Aunty M Brain Tumours. 😊 Claire Bullimore, a brain tumor survivor in the U.K. interviewed me for her Brain Tumour stories.

Claire is a brain tumor support advocate, blogger, author, speaker, and social media guru, and also , like me, wanting to raise awareness of Brain Tumours.

Please take a look at her supportive information for others with Brain Tumours, read her story and like her Facebook page here.

I am sharing her info below:

Mother of 4 was Diagnosed with a Hemangioblastoma

 

 

Jo Barlow mother of 4 was diagnosed with a Hemangioblastoma in 2016.

After being given the frightening diagnosis that she had a Hemangioblastoma. Thankfully, after successful brain surgery, Jo is brain tumour free and there is no sign of reoccurrence.

But, that was not the end of her troubles. Jo was left with many side effects.

She decided to write her experience through a blog to share her journey with the ups and lows.

Here is Jo’s story

 

When were you diagnosed?

22^nd April 2016

How did you find out about your diagnosis?

After giving up with various appointments with the GP and only finally being referred to a neurologist on the 3^rd time of asking, the neurology appointment came through for over a month’s time. After a week or so of waiting and I was getting worse by the day, sat on the sofa unable to walk or move far, my husband called my parents who agreed to pay for me to see a private Dr as it seemed the NHS was not able to see me faster. Two minutes in the room with this consultant rheumatologist  (we thought it was possibly damaged in my neck as it started with neck pains and couldn’t turn my head etc) and him seeing me walk he suggested I needed an MRI due to a rare problem with the brain as I ‘was drunk when not drunk’. I had a private MRI 2 days later, came home and had lunch and got called back to see the doctor an hour or so later…I knew it wasn’t going to be good news!

I was sat down and I saw on his computer screen this large white lump on my MRI picture, clearly a tumour in my brain. I was told then the neuroradiologist was 99% sure it was a benign hemangioblastoma and could be removed with surgery…

What were your symptoms?

• Feeling dizzy, losing balance, walking into objects (or thinking I will) feeling like I was walking on a boat (looking drunk when sober!)
• Legs feeling wobbly and weak
• Neck pain- sharp shooting pains. Head pounding at the base of the skull. Hurting when I turned around too fast.
• Headaches gradually increasing, including them waking me at night (especially if I laid on my front or tipped my head up)
• Increased head pain and dizziness when I coughed or strained
• Tingling/numbness in my head and neck
• Squinting to focus straight, vision jolting
• Clumsy

 

‘It’s all in my head they said’

 

How are you doing now?

I had a tumour removed less than a month later on 18^th May 2016.

It’s been an interesting journey, my tumour is supposedly all out and fine, and I am not seen as having any further issues by my neurosurgeon. But I still have daily struggles – fatigue, feeling unbalanced, being uncoordinated, vision issues, a numb head, head pains and soreness, neck tightness, being able to say what I want- certainly I am not able to respond as quickly, speech issues when tired, memory, not being able to multitask now, brain fog- all made worse when I am tired. But I fully appreciate it could well have been a lot worse. It’s made me appreciate life more.

What motivates you?

Knowing I have and am still helping others, with my book, blog and facebook group

 

 

What is the toughest challenge survivors face?

Navigating medical beliefs, especially those that are not right for you and doing anything alternative – where you are just ridiculed.

Knowing that when people think you look OK on the outside they assume the inside must be OK too…

Overcoming the frustration … of needing sleep, not being able to say what you think, not being able to do things the same as before, of having to change so many plans.

What is next on your agenda?

Hopefully, reach more people and help them go through similar without so much fear, pain and anger. Showing honesty and not pretence.

You can connect with me on my Facebook Page and join my Facebook Group which is a group that is only for those with hemangioblastoma’s (or family)

 

 

My 12 yr old son is home educated, so I am always at home with him, but when I feel able to I have been updating my website and blog. Occasionally I do some art (now very much more abstract!) and also help my husband with his bands’.

I didn’t have a job to ‘go back to’, and I don’t think it would be easy to be employed knowing I have issues with so many things and they can vary by day, I never know what I will wake up to

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Who is your personal hero or are your heroes?

Anita Moorjani – as her work got me through my craniotomy.

My neurosurgeon Timothy Jones – for the very same reason!

What would you say is the most interesting thing you’ve ever done?

I wrote a book and published it myself just 16 months after brain surgery!

My book is: ‘It’s all in my head’ 

available on Amazon – Check on Amazon

 

Any advice for people or loved ones that get daunting diagnoses?       

You can always choose how to respond- it can totally change how you view the situation. If you will remember it as a nightmare, or a challenge.

Take time to listen to what ‘you’ want and not just go with what others suggest or fear based panic.

Look at alternatives.

For loved ones – just hold the person when they need it-  and listen, help them find the answers they need.

Tell us something about yourself that people probably didn’t know… anything?

That I go to gigs almost every weekend. My husband plays the guitar and my son bass – in the same band!

It’s a good test to practice how I can always choose my feelings – I can find it too loud, irritating, panic and I cannot cope or I can sit back, relax, trust and enjoy the music

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Conclusion

I am so grateful to Jo for sharing her story and I give a high-five for writing her story for others to benefit from. It is not easy to write a book which is so personal to a person and be so vulnerable to showing the good and the bad.

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5 Alternative Things that Helped Me While Waiting for Brain Surgery

1. Frankincense Oil.

I took this as soon as I knew I had a Brain Tumour, a drop on my tongue 2 or 3 times a day as well as some rubbed on around the back of my neck. (Most people say it should be diluted - although I used it neat and it didn't cause a skin reaction) After a couple of days, the headaches that had made me wince with severe pain and I could barely move from, subsided. I had less pounding inside my head (even with all the crying I did as I had just found out I had a Brain Tumour!) and the headaches stayed away.

I remember saying at the time maybe ‘now I knew the cause’ my body didn’t have to shout at me to address the problem. 

But after I went to my pre-op appointment I was told to stop this and all supplements, which I did. 

Two days later the headaches started again, a further two more days and they were so bad again I had to go back to A&E to get them checked. This was when I was admitted with hydrocephalus and my operation date brought forwards. 

I am sure the frankincense helped reduce the swelling in this time and so reduce the pain (as has been shown in some scientific studies - some are on my website here.) 

I signed up to doTerra as this helped me get my own oil cheaper. Please buy from me, or elsewhere if you prefer. But if you want to ingest essential oil, do make sure the brand is safe to do so.

2. Meditation CD's.

This was one of the few things that calmed me down. I stayed with an iPod plugged in most evenings and when I needed to relax by day. I listened a couple of times a day to Getting Into The Vortex as it was slow and repetitive, as well as aimed at healing your belief system.

Plus at other times I listened to the iChill music as it was just relaxing, and better for daytime. 

3. Healing treatments.

I had some Gaia healing – a form of Reiki- from a friend. Even in the midst of being in a total panic I managed to switch off and be fully calm and relaxed, seeing my relaxing colours of purples and yellow. I had also had some Bowen Therapy before I knew about the tumour, it drastically helped my headaches and the dizziness. Re-balanced my system. (It also helped loads after surgery) 

But realistically many types of healing would be suitable, Reiki, Acupuncture, Reflexology etc…Whatever you feel will suit and calm you, you can afford and get to.

4. Praying.

I am not religious, but I prayed to the universe, the angels and deceased family to help support me.

A friend also was in a healing group where they all sent healing to me at a certain time of the day. Sometimes I forgot what that time was and yet I often realised it was this time as I suddenly felt calmer than I had been. If I relaxed, I often felt waves of calm and clarity come over me, just knowing others cared was a hugely powerful emotion it itself.

When I was waiting for an emergency scan before my op, a woman waiting there also prayed for me. She held my hands and prayed with me for about five minutes that I was healed and tumour free. It was one of the kindest things I have ever experienced. She said exactly what I needed to hear and …just cared! 💖

I have since seen The Power of Eight book and how this simple effect can change many things.

5. Visualising.

In this time of waiting for surgery I tried to see myself healed and doing things I liked to do again as much as possible. Being able to hug my youngest son, seeing myself without the tumour in my head, having had it removed easily, not needing a blood transfusion (as I was told was likely), getting back home to my bed quickly after surgery. Fully trying to feel the emotions. 

I also had an angel card reading from a friend who gave me a reading with a mix of positive response to my surgery as well as prayers to say when I was stressed. They really helped calm me when I felt I couldn’t cope any longer. 

I also kept getting the word ‘trust’ being said or seeing it… I knew I had to trust and kept repeating this to myself.

Plus …

The less alternative - getting outside in the sun, feeling its healing rays and listening to nature as much as I could (even through surburban noise), talking to friends, distracting myself with anything, such as a new TV series. It was hard when I couldn’t read nor easily look at computer screens, the distance TV was just about as much as I could handle but even that I often had to just listen to as looking at the screen was making me dizzier! 

I also wrote some my feelings down, to help process and release the pain and fear… very scrawled, as I couldn't read it easily nor coordinate well, but written down. 

Much of this became my book, It's all in my Head, written about my personal experience of having a Brain Tumour. 

  

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My Brain Tumour Symptoms

Someone asked me today what the symptoms of my Brain Tumour were, as they had been having odd head pains and were worried of the cause. 

All of my day to day concerns, how it progressed and how I was feeling at the time were written in my book - IT'S ALL IN MY HEAD. My tumour was a 3cm benign, Hemangioblastoma in the right side of my cerebellum.

However these were the symptoms I took to my GP on the 23rd March 2016 (written in the main text) and then the added symptoms I discussed with the private Rheumatologist on the 13th April (written in blue italic text.) To be honest I didn't even get chance to discuss the last parts as once he saw me walk he strongly suggested I should be having an MRI to check for a brain issue...

But just looking at these dates, less than a month apart shows how fast things were changing.

So I had written:

23/3  13/4 in blue

Current symptoms

• Loss of balance- feel I am on a boat. Hit objects as I walk past, or think I will.

• Legs feel wobbly and weak.

• Sometimes hurts when I turn round too fast/far (parking car is hard) then get dizzy. Cannot look up and down or side to side quickly.

• Occasional tingling/numbness in neck and head. (like been laying on something hard)

• Tightness on top of head, or back of head (between ears, above or behind)

• Squinting to focus straight.

• Back of head and neck (atlas joint) pounds at times. Definitely hormonal (started during period and bad with each since- could feel around eyes too)

• Head pains seems worse if I sleep wrong (on front with pillow, or tip neck up and back) if I turn to front in sleep I wake with headache that takes an hour or so to go away.

• Both headache and unbalance worse when cough, sneeze or strain. (if I put my head against the wall it seems ok!) going to toilet is awful

• Occasional headache on front top of head.

• Started neck pain when painting ceiling, but unbalance started getting bad a month or so after this.

• When bad – if I go to sit down I have to look down at floor, sit then gradually look up. If I don’t I have severe waves of pain, and dizzy after. I feel eyes flicker?

• Hormonal headache- such a severe pain that I feel I am jolting/twitching when I move my neck, get up.

• Sometime lifting head when laying on front is agony! Severe pains, both sharp and ache all around atlas. Feel dizzy. Eyes feel odd and want to just move back and put head on floor and cry.

• My neck cracks/grates when I turn it now- been told arthritis by physio- but didn’t have it before December.

Symptoms for a while

• Occasionally- Struggle to balance self with eyes- walking seems jolted and makes me feel unbalanced.

• Travel sick and feel weak and wobbly after a drive.

• Blurry eyes & floaters -had checked out by Kingston Hosp ages ago and optician recently. Prescription (mild) has changed opposite since 2 years ago- and even new glasses don’t feel better- is it just temporary blurriness?

• Lights blind me – sun or car headlights in dark

• Find myself pushing imaginary glasses up to see better (I had glasses for years)

• Had odd tingling episodes- was checked for carpel tunnel years ago. Plus have felt similar in legs after cranial therapy- like when all hairs been pulled out.

• Occasional issues swallowing (keep wanting to swallow)

• Occasional twitches, where I can feel a muscle tightening up and twitching, esp when stressed/nervous/cold.

• Clumsy!

• Ear taps/clicks when someone is moving next to me in bed/on sofa.

Time Line of Symptom Progression

End November - painted ceiling. Had to hold neck up to finish as neck felt weak and sore. After had sharp pains in neck like someone flicking elastic bands at me.

December - saw osteopath x2 as pains not better, told to not do exercises until totally better- which it never has. Started taking B12. Wearing scarves to keep neck warm as got less pains. Started getting pain and ache in atlas joint hormonally – it started when period did and gradually reduced.

January - Dizziness and brain fog started. Panicking as legs felt weak and I was ‘drunk’ (I don’t drink- I don’t like the feeling!)  Awful when sit down (after being up), worse when sneeze, cough or strain- whole atlas area hurts/pounds. Stopped B12 and felt a little less dizzy.

February - 18/2  - opticians. Blurriness is astigmatism, given glasses as they may help. But they were opposite to what I was prescribed 2 years ago and no longer help.

22/2 – Physio- given neck exercises, but sure they make me more dizzy if I do more than a few. Told them that and said I should continue. (I feel I shouldn’t)

26/2 – ENT. All tests  (and hearing) OK and not showing it to be an ear problem.

Headache for whole of period.

March - 9/3 – had neck X-rays. First one was asked to do again as she thought I had my neck crooked, but 2^nd was worse- said it looks like bones are OK, but muscles are not and causing a bent neck. Took one from front when I said I was asking for neurologist appointment.

22/3 -  Physio- massaged atlas joint/ neck. Says does not think dizziness is just related to pain. Told I should still do exercises (even tho I think they are making dizziness worse) as my neck is tightening up. Felt better for a while after.

Said the my neck clicking is arthritis- even though I didn’t have it before December.

But ...

It is now totally taking over my life - I cannot go out alone, panic when I do if get dizzy. Headaches starting in night (3am > ) can’t sleep. Driving at night harder- car/street lights too bright, road feels its ‘coming at me’. Don’t feel my legs are connected to brain.

Know I am totally stressed – both physically and mentally. 

Tired. Tearful. Depressed. Exhausted.  

23/3 – GP is referring me to neurologist. Neck x-rays were normal.

27/3 - Headache started with period- gradually increasing in pain. Most of the night I could not get comfy, had to sit up on pillows. Couldn’t get to sleep until 1ish. Woke at 4 with severe pain that lasted until 8-9.  Went back to sleep soundly until 10-11. When got up the pain got better. Almost felt OK at times. (but hurt if i moved and went to loo etc)

Took paracetamol and used ibuprofen gel which numbed some of the pain but I could still feel it. (and I DON’T take pain killers. Taking 2 tablets gave me nausea, even when taken with food!)

April - 2/4- Headache had started to lessen, but came back as had a cold! Couldn’t blow my nose as head felt it would explode. Sitting on sofa barely able to move and just crying from pain.

Pains with both period and cold mainly in back - right of atlas, transferring to back of right eye, and sometimes top of head. 

Huge waves of pain in neck/back of head whenever I moved – so that I felt I was twitching with pain.

Now-

Atlas area hurts, and sometimes pounds, when I move head wrong- esp if turn to look slightly behind me to right, and also get dizzy at same time. Often have muscles in knots in neck. Am limited in so much.

Want to know I am not causing any damage when I turn etc as it feels something is badly wrong to hurt this much.

How do I know its not … damaging nerves in neck? Chiari malformation? Related to Neuro issues? (esp more severe ones) Brain Tumour?

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