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!

Scan Results...

 

 

"MRI scan looks excellent with no evidence of any residual tumour"

💗🙏💗🙏💗🙏💗🙏💗

"I am extremely confident, therefore, that your tumour is exceptionally unlikely to recur, 

however as per the genetics clinic advice I will arrange for you to have a follow up scan in five years time."

 

 

No words, but I'm sitting here laughing and crying at once!  

 

 

 

 

 

 

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Scanxiety and Medical Cannabis

After the horrendous experience during and after my last MRI scan I'd decided for the last couple of weeks to take some cannabis tea. Using lots of the ground leaves so it should have more CBD in it as well as THC. The CBD oil I had bought and had been using for several months was now only giving me very limited benefits.

My logic being it might help calm me and also help treat the neurological issues I still have. It seemed to be working as a few teaspoons of tea a day just lowered my stress levels, and the shaking inside seemed to stop.

But on Thursday, I came downstairs to see letters written by the NHS on the table. I saw the logo and felt totally sick to the stomach. Even though a few seconds later I realised they were routine letters for other things and two were not even addressed to me, the internal stress didn't go with this knowledge and I still felt really anxious a couple of hours later...

So I decided to make some more weed tea and once it was done took a mouthful, as I had done with the last batch. I few hours later I took another gulp and after hour or so another...

I felt calmer, very slightly wobbly, but nothing worse than I have for the last 4 years, I was even going to post a comment saying:

 "So basically my brain has felt like it's been high

for the last few years,🤔

Maybe I should accept this feeling more? 😂" 

I felt fine and made dinner ... Although felt slightly more wobbly as I was finishing my meal. Thought I'd have some ice cream and ate a bit, then tried to look at my phone and forgot what I was doing as I was doing it. 

Then my head spun.
The full going in circles like being on a fairground ride... 
The memory of waking up after brain surgery and then first trying to sit up... Everything blurry...
The trying to eat when my world was spinning... 
The thinking I would pass out... 
Not knowing if it was panic or a brain response, but that fear was not helping one bit... 
The violent, feel sick to your stomach, nausea.

I all but ran up to bed crying and shaking. Nothing would stop the revolving vision. Me feeling totally unsure if it was having too much tea or what...

I'd not had that much more than previously, although it was another, maybe stronger, brew and still warm. I was not able to remember how much I'd had, I couldn't quantify a mouthful to know if it was too much or not?

My thoughts still not sure if it was the tea, a panic attack or my brain was fucking up again...

I knew I'd had a vestibular neuritis episode a few weeks after my last MRI. Maybe that was the link?

Anyway, I won't bore you with the next few hours nightmare thoughts, but fair to say I relived every single fear, trauma or sensation I had before, during and after my brain surgery. 😱 Each memory seemed like it was coming up to remind me I'd felt it, maybe not fully faced it, and that somehow it still traumatised me. That I'd not processed these fears yet and never really discussed them out loud.

I had visions of walking to the toilet in hospital ...
when I couldn't see anything as my world was spinning so much ...
crying alone in hospital as I felt so terrified and tired ...
reminders of blurry, spinning vision ... 

and the ultimate terror of feeling I was drifting off while laying in theatre as I was given anesthetic for my surgery - Not knowing if I would actually wake up again nor be able to walk or talk OK if I did ...

I had horrendously strong memory of every fucking traumatic experience while feeling dizzy before and after my brain surgery, as well as every severe panic attack that I'd ever had where I'd felt out of control and dizzy.

All in one evening. 😰

It took over 2 hours for the violent spinning and feeling I would pass out to go. 2 hours that felt like days... Weeks... Months...Years. All compounded into one.

Yet part of me also felt totally stupid, I'd been sipping tea for a couple of weeks, why suddenly did I feel this horrid? Why did I drink an extra mouthful so close to the others? The one evening Dave wanted to go out...

I don't drink - I stopped when I was 18! I know I don't like the feeling. I am sensitive to almost every medical drug I've tried. If I have too much dark chocolate I get shakes from the caffeine, don't drink even a normal tea and certainly not coffee, sugar gives me a jittery rush, gluten or milk = belly pain and feeling slightly poisoned. I can taste a drop of alcohol in a glass of water... (Yes my kids tried it!)  I am all but in a coma from taking one antihistamine, I am a zombie on co-codamol, the Heparin injection I could feel for hours, I can't even have more than one paracetamol without nausea and Ibuprofen is worse- hence why I stopped pain killers 2 days after brain surgery!  I get like I am drunk just when I'm tired ... 🙈 What the hell was I thinking? 😬


I'd taken months to even take a sip of the tea as I was terrified of feeling wobbly again. I had only taken it before bed for a while, just to be sure I wouldn't feel it. Then one tablespoon only by day. Why the fuck did I sip it? I know I can't cope with feeling drugged! Since I was a kid if doctor's wanted to give me painkillers I refused as I'd rather have pain than this feeling...

Then I started panicking again that it wasn't the tea, but more brain episodes I can't cope with... only the fact that I couldn't stop drinking water reminding me that it probably wasn't that!😅

Eventually after midnight I felt calm and safe enough to go to sleep and not feel it would be the last thing I did. 😬

I woke about 9am Friday, still feeling shaky inside, still feeling slightly wobbly when I got up.

But mostly just like I'd had a battle with my nightmares and every bit of negativity my body knew and held on to.

I managed to get some porridge that was made for me, then just watched more TV and tried to stop myself getting stressed again. I knew I just needed to sleep more, brain surgery was a great teacher in knowing when my brain couldn't cope any more. Eventually I fell asleep and woke about 2 1/2 hours later. Feeling a bit better...

Yet wondering how anyone could have so much stress inside them and still function?!

I'm now too scared to drink anymore tea, feel an idiot, and like I have been reminded of all the darkness and fears... Anxiety, frustration and anger back to after surgery levels 😩

The only positive is that I know when you keep getting reminded of hell, you appreciate the light again better...🌞

 I then saw this picture show in my news feed the following day!

I'm not ashamed about using a plant that has been proven to heal many, many people of all sorts of issues. I have heard of several people controlling or even healing their brain tumours from taking it... Especially as it is known to be very good for all sorts of neurological problems as well as anxiety.

I am purely wanting to take a natural plant to IMPROVE my health, rather than relying on toxic pharmaceutical drugs that almost certainly damage it. 😕

I am far less ashamed than I would be if I chose to get drunk, and yet for some reason that is a totally acceptable thing to do. 🤔

I might just not take as much next time! 😁





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Scan & Mask Stress

I managed to get my 'cancelled due to corona' MRI re-booked by writing a letter to my neurosurgeon saying I believed I already had corona and that I really wanted my scan still, as waiting was causing me stress. Not knowing if the after effects could possibly be returning symptoms or not. Anyway a week or so after asking I got called saying they had a cancellation and would I like to go next week.

So I've had a week of extra scanxiety. 😬

The scan was on Wednesday 3rd, and when we get to St George's the hospital was half empty, no outpatients, nothing. Loads of beds double stacked empty in corridors, we were lucky to cross with one or two people in each corridor and over 3/4 were staff  - considering they only had one entrance open at the moment this is insane! Normally it's as busy as walking up a small high street - and that's when all the entrances that are open, not just this main one.

When we got to the neurology scanning area (after walking past the lift outside that theatre where Dave had to wait for over 6 hours... 😶)  there was no one there, just a bag on a chair to show a staff member must be around somewhere.

I looked to check I was in the right place and among my name could see there were 5 other people on the booking in sheet. (Normally it's 2+ pages)

Signs were up on every other chair in the waiting area, saying you could not sit next to another person. Good job there were two near each other that both weren't out of bounds, or I would have ignored the sign or sat on Dave's lap!

Eventually someone walked over, I assume a radiographer, telling me to fill in a form and here was a mask. That I had to wear a mask in the scan! I told her I didn't want to as it would give me a panic attack, and that I've already had corona.  She huffily said it wasn't for my benefit it was for hospital staff safety 🤔 

Cue extreme stress and a rather illegible form as I already couldn't think straight!

I took a mask and promptly ripped the inner, more plastic, layer open so if I had to wear it I could breathe better, but refused to put it on. I was seriously thinking about walking out as I didn't want to wear it, I was freaking at the thought. 😔

Another radiographer arrived and discussed with the stroppy woman which of them was doing this next scan, something was said quietly and thankfully this other woman said she would do it and took me down. 🙏🏻

The Corona rules there are stupid (as they all are!) I HAD to get changed as they wouldn't let me in the scanner wearing my clothes. (Like my clothes would be more infected than my breathing, if I had Corona?!)

Yet I had to put my clothes in a (un-sanitised) locker and not just wear a gown over to cover them 🤔 (I had short leggings and t-shirt with no metal, so I knew I could wear them normally in scan) I had to keep my socks on and wear shoes walking in the scanner room 🤔

The radiographer thankfully accepted I wouldn't be having gadolinium without too much of an issue - I said my neurosurgeon agreed it wasn't necessary. She did go and check and came back saying that was fine.🙏🏻

They took my CD to play in scan, maybe they cleaned it & I didn't see, but insane if they didn't with the rest of the rules.

Thankfully no one mentioned the mask

(By the way, the staff have full masks and visors. Well some did, those near patients. Most staff walking up corridors, porters etc had nothing.)

But by the time I got in scanner I was stressed and panicking, it wasn't the machine or the scan as such, just this compounded fear or all the masks and rules which were not making sense. I felt I was stuck in some alternate reality where everyone is insane and I am the only one seeing past it...

I was in there and despite listening to the relaxation music, had to try to calm myself trying to do multiplication 🙄, wriggling my toes in order - anything to distract my brain! And after feeling for much of it I was constantly on the verge of pressing the buzzer to stop, I almost relaxed near the end.

I knew I needed to get this scan for my sanity.

But was in such a tizzy after I even ended up accidentally pulling emergency cord while getting changed! 🙄

When she gave my CD back, I asked the radiographer why I didn't have to wear the mask and she said they had already had another patient not able to wear one earlier and she was OK with the 'risk', she also said not wanting to be stuck in scanner with a mask is understandable and a very valid reason. 💜

I was so stressed with the whole experience, far more than the actual MRI (although not knowing if it's OK or not is a stress in itself) that had a huge panic attack that evening once I got home. 😞

I didn't hear or see anything to suggest anywhere in hospital was busy . Didn't even hear or see an ambulance, which is very strange! Normally it's an all but constant noise.

Dave had walked down to cafe while he was waiting for me and said he was the only person in there.

I hate to think what it will be like once they start having routine appointments again. 🤐

Also I realised that the masks are almost giving me some kind of PTSD. I knew I didn't like them (and don't agree with them for lots of health reasons) but this hospital trip was a very unnerving experience...  the fear is just magnified 1000x as everyone is acting like everyone else is a potential killer. You can't even see if the staff are smiling at you, or get a human connection... The lack of humanity got to me 😢

And hearing they now want masks on public transport and staff are wearing them in shops is affecting me. Too much like surgery ... Too inhumane 😬

So now I wait... feeling rather stressed and trapped in a mad world.






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Questioning Scanxiety

I don't find winter an easy time of year, I certainly am no where near as active or productive as in the spring and summer, and cold winds still can make my head feel nerve pain or achy. Plus I really miss sunbathing and recouping my energy - my kids don't call me a tortoise for no reason! 😂

For the last 2 years I also started getting dull headaches in the winter, starting from about December, (see Crying in the Rain) I remember getting odd sensations and scanxiety for the few months before my last MRI (in April 2018) then being relieved that it was fine. (see Scanxiety and SCAN RESULTS!)

Then again last year the same thing happened and I started with the dull headaches just before Christmas, but thankfully I reminded myself that this was seemingly an annual occurrence, and didn't get too stressed over not having a scan soon for reassurance.

The same has happened again this winter.

I don't know if it's purely as the cold weather triggers head pains, or if somehow my body has held the cellular memory of what happened?

...and so, as the major symptoms of my tumour started in December, my body kindly reminds me of it each year. 🤔

 ↔

I also know that I have another MRI due this year, around April or May time, and so I feel there is some tension and scanxiety brewing again..

Stress causes my head to tighten up, I can now easily feel it and the muscles right up my neck into my head, which then in turn causes my head to hurt.

I know my Neurosurgeon reminded me last year that 'head pains are not actually from the brain, as the brain has no pain sensors' ... but... I certainly had headaches when I had a brain tumour - and right over where the tumour was, plus after surgery I could clearly feel a buzzing 'in' my brain! 🤔

I have also realised that somewhere in my mind I have taken it that between 3-4 years is when a re-occurrence is likely to occur, if if does. So it feels this is an important scan to know what's happening. 

I fully realise it's not much point worrying about what could easily be fine, but I also know confirmation that all is OK will be very reassuring.

"Suddenly the head pains are just side effects of surgery again rather than the concern the tumour 'may be returning'..."

↔

It feels like these follow up scans are an information and possible decision time, much like when you are pregnant and go to a ultrasound to confirm all looks OK with baby. It doesn't change anything about what's happening, but it helps you know that most things are probably OK and you can relax a little. Or possibly give you advance warning that there may be a concern that needs rechecking or an action taking.

There is so little information about hemangioblastoma's online, even less about those not linked to VHL disease, and really not much at all about the re-occurrence rate for sporadic tumours as mine was. 

Much of what I have read has changed within less than 4 years since my diagnosis, as has information on the cerebellum.

However it seems the general consensus is that up to 25% of sporadic hemangioblastoma's regrow. Whether that is because of the area in the brain and if wasn't all able to be removed first time without damaging something, I am not sure. 🤔

Even with my Facebook support group, of about 100 people who also had cerebellar hemangioblastoma's, I think only a couple had surgery very similar. The majority of  hemangioblastoma's are surrounded by a cyst - mine wasn't. (See here for the different types)

Most didn't get an extra hole in the skull at the front of their head for a external drain during surgery, and I don't think any others have a similar plastic plate in their skull. Some had 2 surgeries, one to embolise the blood vessels first, others a second for different reasons such as draining the cyst first. Many have cuts straight up their neck and so they didn't have their greater occipital nerve cut, nor half their head still being numb. Some were in hospital months after, and I think my leaving after 2 days is faster than all. 

There is such an obvious variation in types of surgery, let alone what we don't know about the actual operation in theatre, that this 25% re-occurrence could also drastically differ from the difference in how surgery is performed and the surgeon's knowledge. 

I simply don't think there are studies working out the best outcomes. I also doubt any surgeon is going to admit a better method has since been found, so us patients aren't going to know!

Definitely no studies have been done in how often follow up checks should be carried out, some have them every 6 months, many yearly - but others having none! 

How much does insurance and cost play a part into this recommendation? 🤔 

My scans being 6 months, 2 then 4 yearly so far; then if all is OK not for another 5 years, are very much being at the lower end of the scale. 

So ... From my observations on my group, if a tumour has reoccurred then it seems to be between 3-4 years after their first surgery. This may well include those with VHL, as many haven't been tested on first occurrence of their tumour, it may also include those whose surgeon didn't remove it all in the original operation, but hadn't made that clear. 

But I now have the belief that my scan will be important. 

It's 'the' most important one.

↔

It was only on someone else in this group saying that they were due their first yearly follow up and how their surgeon had said this was the most important scan that I realised how much...

... our information can affect our thoughts and therefore our reality. 

They were nervous of this first scan, me of my next...

 ↔

Is it any different to birth and other Mums either telling you that 'You'll be begging for an epidural' or 'It's the most natural amazing experience of your life' and it changing your perception and fear completely?! 

(Sorry, I have 4 kids... I was told these, and mainly other fear based stories a lot!! 🙄As it was I had 4 births without drugs, and two home-births which very much showed me how much of a variety there can be, and much of it and the 'luck' is based on your fear, knowledge and accepting, or not, what is) 

But right now, I'm a bit like a pregnant mum awaiting her scan, not wanting to believe everything is alright until you get confirmation all is OK. Sort of ignoring the scan date and continuing with life until the day arrives. Not yet quite believing all is well and getting false hopes up...

You know it doesn't guarantee everything will be fine, but it certainly helps reassure you there is nothing major to worry about!

As I have said before ... One of the hardest things to deal with is that the after effects from my brain tumour are the same as the symptoms of it ...

All you can ultimately do is trust. 💖

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Even Trees Wobble

Several days ago I saw a fundraising post online about someone who also had a Hemangioblastoma and the headline:

“Now, 10 years on, she feels it is as if the experience never happened.”

As well as her words:

“I feel like it’s as if it never happened. I feel the same as before I started to be unwell and I feel so very lucky to have survived a brain tumour”

And whilst I fully relate to the lucky part... I am nowhere near feeling the experience never happened.

Every day, several times a day, I am reminded about my tumour. With various pains from my head, tightness, pulling in my scalp, itching, my neck feeling tight, blurry eyes, foggy numbness of my right side of head and behind my right ear, feeling wobbly, doing something uncoordinated, feeling a bit spacey. Plus all the other daily and exhausting neuro-fatigue issues. The ones I am not ‘supposed’ to have.  

Plus its winter, which is never an easy time for me as everything feels it is shutting down, dark and cold. So when I am already struggling I start to overthink again … Will I always have these issues? Will I ever feel properly balanced again? Why is the hole at the front of my head aching more now? And why is it so wide? Why do I even have it? The gap between the sides of my skull bone I now feel are a fingers width! It's not even where my tumour was. Was I this bad last year? Am I getting worse? Will I recognise if I have signs of the tumour reoccurring again? Will it reoccur? Could I cope if I had to go through this all again? … my healing going back to the start ..?

I don’t want to walk the dog, I don’t want to walk alone, I feel wobbly. It reminds me of those months of feeling ill and everyone saying I was alright … trying not to panic several times a day as I wobbled, or did something that felt wrong and feeling like I was drunk or in another place. The fight or flight reflex constantly sending jumbled messages that my brain couldn’t cope with.

I feel the wobbliness is just inside me, a feeling I have - as no one else notices it. Or they are too polite to say? But then they didn’t notice until I was very ill before …

I try and think, have I really been better since surgery, or is it just the same type of reaction but I am struggling with dealing it today? And I remind myself that in the summer I went out many a time feeling wobbly and wondering if it was as I was too hot, last winter I had to keep the hood on my coat up as my head couldn’t cope with the cold wind. I remind myself of these posts I wrote about my surgery side effects. This one written in December last year saying I have been struggling for the last few weeks and this the following February. Not much has changed, I could have written them yesterday! 

 

In theory with my type of tumour it is out and gone, and it is unlikely it will come back, but if it does it's not much point me worrying about it. I knew last time it was more than just anxiety, I am sure I would know again. Plus there was nothing showing on any of my scans since surgery, the last one being only 6 months ago – I just have to question my logic. Where I have seen 1+1 = 3, but I haven’t stopped to check and count! To stop worrying and make the best of what I have. I will just have to hope that in 7.5 years I too will feel like its never happened 💜

So I walk the dog, fuck it if I am wobbly, it’s not that ‘brain spinning’ dizziness or the wobbly after surgery when the world constantly moved and I got travel sick from just looking at things. It’s just a day where I wobble, similar to many in the last 2 ½ years…

After I do a couple of laps of the park I feel I have lost much of the wobble, being able to walk when I don’t need to follow a ‘path’ is much easier than walking through people or along a narrow footpath. Then as we are about to leave the park I hold on to a tree there. I often sit on one of its low branches and ground myself connecting to the earth, but today its really wet and so I just lean on it instead. As I am leaning I think I can feel this branch move, swaying in the wind, or is it me moving inside again? I lean a bit more and with another gust it once again moves. This big tree with thick branches is moving in the wind, it's wobbling. Its top half sways, but it still has roots firmly in the soil. Grounded. Today just realising a tree does the same, its top half sways and yet it is grounded, is enough.