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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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!

Balance after Cerebellar Surgery

When I left my neurosurgeons office after my 12 month scan and follow up, I was told I was ‘back to normal’. Now I fully understood and was enormously grateful that I was classed as ‘normal’ by the hospital, my tumour was gone, I was not needing any further treatment, I didn’t even need to take any medication. Yet I certainly was not back to the same position I was prior to my surgery. Well prior to the time my symptoms of feeling ‘drunk’ and wobbly started!

Many a time since then I have had to pull myself together to go for a walk with the dog as I was having a wobbly day and felt I was somehow buzzing inside, been extra careful not to drop cups, glasses or knives when in the kitchen, carrying an item with a very conscious thought about doing so, felt anxiety as my balance was not right when shopping and I felt a bit 'spaced', had to actively think and control how I was walking over steps, wires, uneven ground or even work out how to manoeuvre round people who were ‘in my way’. Sometimes just using a public toilet felt like a challenge as to if anyone would notice anything or dealing with the horrid feeling of being dizzy and wobbly simply from walking in a zig-zagging queue at a resort or the train station.

Yet I had no choice but to get on with it, never really knowing if it was a mental fear causing the physical issue or the physical issue causing my mental anxiety, or a nice combination of both! 😬

Yet part of me still struggled with the feeling that no one 

really believed me. 

‘My tumour was out, I should be better by now and back to normal’. 

It was certainly an invisible issue. 

Often I don't think even my family knew anything...

Frequently the balance issues were combined with the fear the feeling would go on forever. Then if I had a few good days, even weeks, when it returned I worried what was going on? Was this again the sign that my tumour could be returning?!

If having a chunk of brain missing caused this, then why does no one seem to really care, or even mention I might still struggle?

I guess I accepted it rather frustratedly. (My husband would probably say I whined through it!!😂)  I knew it was ‘my new normal’, and knew doing anything even the smallest bit stressful made it worse. – I knew that, but some days it was very much tougher to accept than others.

Balance, coordination and feeling dizzy (or wobbly) has been one of the main issues on my Hemangioblastoma Facebook group, not surprisingly since the majority of us have had a tumour on their cerebellum! Yet much of the time others say they are much better since before surgery, the symptoms are mild, infrequent, worse with stress and they have also accepted their ‘new normal’.

But a couple of weeks ago, someone posted they were still having coordination problems while walking and feel dizzy nearly 2 years after surgery, and asked “Is this normal?”

These were the replies from others who also had a cerebellar Hemangioblastoma and subsequent surgery:

"Coming up a year since op for me, wore boots with a small heel on Saturday and that threw my gyro off a wee bit. 😁"

"I am 1-year post surgery this week and I still get very dizzy especially after looking up or bending down."

"Yes, I have too. I find that I have to think about and plan my walking. It is tiresome, but you just have to try to adjust to the 'normal' that is today. I walk on the beach and uneven terrain a lot in order to 'relearn' - not easy."

"I occasionally have balance issues. Not all of the time. My wife says that I always lean to the left. 3 years post-surgery."

"I'm with you. And it is disturbing. I have been fortunate to now see a Neurologist and neuro physio. Not miracle workers but they do understand and give appropriate exercises to me. Some days worse than others".

"It's a very hidden disability."

And even after many years, others still struggle at times:

"I also have coordination issues (I'm almost 12 years post-surgery.) Like others I have gotten better at learning what makes it better or worse. For the first 2-3 years I would be more prone to get dizzy when walking in supermarkets or in crowds with all the movement in my peripheral (not sure if that makes sense but that is the best I can describe it.) That has gotten much better over the years and now only seems to be worse when I am dehydrated, or things are moving really fast past me - so things like amusement park rides are completely out of the question.  I also get dizzy if I am laying on my back and looking straight up or move my head too quickly from side to side. I also have had to change to a small heel but mostly stick to flats just because I feel more stable in them. I also have noticed that my brain gets tired a lot more quickly than it used to, so the more work it has to do the more tired I get and the more off balance I feel. This Zoom fatigue is a real deal for me! All and all I have been very luck and blessed to have recovered as well as I have but still have my days that I struggle with the new normal."

"I had occasional problems for 14 years after my surgery. My cerebellum had been squeezed by the tumour and didn't fully return to its original shape. I could correct most missteps without anyone noticing but when I walk with someone for a distance, I probably bump into them once or twice."

"I had my surgery 15 years ago and, in that time, I got probably 97% of my balance back. It should keep getting better but I'm not sure how much is better balance and how much is my adapting to my imperfect balance. Biggest problems: If I walk with someone for more than about 200 feet, I will probably bump into them at least once. If I'm in the shower, turning my head with my eyes closed is disorienting and I've learned to touch one of the walls when I do that. Uneven surfaces can be difficult, especially if they are uneven due to snow or ice."

"I've not had any scans since the initial one post-surgery, but similarly can have the odd 'mis-step' (21 years on). My brain was also very squeezed due to the cyst, and I tend to just put these things down to 'being me'. 
I don't think there is a 'normal', just a new normal for you.

There are balance exercises that may help, as might walking with a stick. I know it can certainly give confidence.

I can still get dizzy if I have to move my head from side to side fast, or look up, and get a head over heels sensation if I lie straight back. So I'm just careful / know to avoid doing these things. After all this time, I tend to forget what's happened (re tumour) and have just adjusted my ways accordingly.

2 years is still pretty early on. I know you've done a lot if walking, so you're doing the right things. Time will help, both with healing and with the way you do things / coping strategies, which just become 'normal'.🙂"

My own reply was: 

“My walking is OK. Unless I need to move out the way of something or someone. Then I am likely to wobble into them! 😬

Dizziness varies, some days I don’t notice it, days like today I feel I am having to control myself with every single thing I do. Make a conscious effort to walk straight and not trip, I find walking backwards and forwards such as in these insane lockdown queues makes me feel awful, plus the anger of having to be controlled like sheep angers me immensely 🤨 I've certainly had a few days this week of thinking will this go on forever? 😢

The frequency of struggling has definitely reduced over time, but getting stressed or doing too much makes it worse again. I’m honestly not sure if it’s at a better level or not when it does return...?

I think it probably seems worse when I have been feeling better to struggle again, as my patience is less and I am more sensitive to feeling 'off' from past experience and not knowing the cause of its return😕

I understand that you are frustrated not knowing if it will get better, but I don’t think the neuro team can ever tell you... it’s so variable on so much.

I think the more we challenge it (by walking on rough ground, or by turning head as we walk) it can reconnect the brains neurons - which help. I had to do this most times I walked for months, even years, after surgery, to get my balance back so that my brain didn’t react wrongly each time I moved.

Plus, we need to find our limits. My symptoms are FAR worse when stressed, tired or I feel pressured or need to do something else that I find tough.

Also, if someone listens to me it helps me in that they know I am struggling and just that in itself often seems to reduce any issues, knowing I won’t be judged. The more I focus on the negative and get worried about it, the more it seems to multiply...

I have definitely had to change some things I used to enjoy though, art and crafts being the main one - I just don’t have the coordination in my hands now. 😢"

⇹⇹⇹

This week I challenged my balance by walking on the beach, yet feeling rather freed in the fact that walking on piles of stones isn't easy for anyone and enjoying the letting go in accepting the wobbling.

I have the gratitude and reassurance that my 4 year scan didn't show any issues. (apart from the known missing bits! 😬😄)

And from these comments from others, I've certainly been comforted that my "new normal" is indeed "normal" for when your cerebellum has had a tumour removed and been damaged.🎔

It may also help you to read my previous post 

10 Things My Doctor Didn’t Tell Me about the After Effects of Extracting a Benign Cerebellar Brain Tumour

 

 

 

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Muddled Words and the Cerebellum

It's past 1.30 am and I am still awake mulling over today's frustrations.

I feel the amount I am saying the wrong words is getting worse. My husband reassures me otherwise, but my memory is so annoying I don't honestly know if it's the same or worsening  I know I am getting angry with myself each time it happens though.😐

Today my daughter went to get items out the still drying and hot dishwasher... I said to her to leave it 'as it's still cooking'. Her and my husband said 'dishwashers don't cook' to which I said 'I know but it's hot' and muttered 'I am fed up with saying the wrong words' 😥... My daughter then said 'Don't blame it on your op mum, as you've always been a bit stupid...'😳

I just started crying.

I know I have never been quick witted ever, and even 10 years or so ago a friend said I write far more eloquently than how I speak.  So it's not totally new...


But since surgery I definitely cannot reply easily to brief comments such as passing someone in a shop, give instructions easily, and I get muddled speech, with loads of wrong words, when trying to explain something (especially quickly) ... Since my surgery I have often said random words and had to start again in explaining, especially when I am tired.



But now I'm noticing it more... I don't know if it's as I am doing more, sleeping less (and so my brain is more tired), that my kids keep pointing it out, I am more able to realise I am saying things wrongly ... or I am getting worse... ?

I also wonder if fear of saying things wrong is actually making me stressed and therefore worse?

I know there were a few more instances today of getting wrong words but only a couple more of this 'swapping' of similar words. (Heating and cooking)

I also said this last week, as my mouth now says what it is thinking rather too easily...

Dave told me he saw the dog pee on my mint plants in the garden today. (I had just picked some mint for with our dinner)

The response in my head, and what I thought I said:

"I picked it from the top of the plant, he can't get his leg that high"

My actual response: (as witnessed by 3 of my family)
"I picked it from the top of the plant, he can't get his dick that high."

😂😂

I can deal with the fact I say a rude word easily, but I can't deal with it as well when I was sure I said something else. How many other words am I getting wrong and not realising? 😕

Plus it still takes me days, even weeks or months, to remember to do less important tasks. I know I kept thinking I needed to book a dental check up for about 6 weeks before I actually remembered to call. It's taken me a week to remember to bring some bags upstairs to put items for the charity shop in.

As I was getting annoyed with myself this week, I again looked up Cerebellar Cognitive Affective Syndrome. (CCAS)

Why does no one seem to acknowledge this even exists, 

or I may be suffering with it? 

Yet it says:

"..the right side of the cerebellum will be responsible for language" 
"It has also been shown that lesions of the right cerebellum result in greater cognitive deficits." 

I had a 3cm area on the right side of my cerebellum removed. 😬😥

And others who had the same cerebellar tumours and surgery tell me they struggle in saying and doing things very similarly. I guess it's the cerebellums fine tuning that scientific studies talk about?

I also did the Cerebellar Cognitive Affective Syndrome test. My daughter read the questions to me, and whilst I realise we are only following the questions basically, I failed 4 of them. When it said failing 3 showed CCAS. 😟

Today I'm feeling like so much has been effected, 

that no one else even dares to acknowledge and talk about with me.

The only positive thing, is I have finally got my appointment for in November to see the Neuropsychologist ...

I hope this will help.🤞






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Balance Beams

Almost every day I take my dog, Enzo, for a walk around the local park. Often I also use the outdoor gym there. More often when it's dry and sunny, and not very frequently in a wet winter.

Since I started using the gym in spring 2017 I have tried to use a balance beam most of the times I go there. After a few months I was able to walk it most times without falling off, so I started testing my balance by looking from side to side and up and down at various speeds and angles while I stand on it - trying not to fall off! (Sorry for the swearing if you have ever seen me there! 😬)

Sometimes I feel I am able to walk along it and turn quite well - as long as I keep looking down at where I am walking! Yet on other days even with looking at my feet, I struggle to walk along it without wobbling. Struggle to turn around, and cannot look up, or to the side, without falling off.

This difference has never seemed to link to anything obvious. Apart from I am not very good if I have just used the gym and my legs are weak!! 😂



The hardest part I find to cope with is that sometimes I am useless for a few days, or even weeks at a time. Then I start to worry if this is the first sign of another problem with my cerebellum... so I get stressed and worried about it, and then inevitably I start to wobble more! 😔

Once I have a few days of improvement then it reassures me that my brain is probably alright and it was one of those things, after all I did have a 3cm tumour removed that was embedded in my brain.

In my cerebellum - the part that controls balance. 

Before surgery I could not even put my heel to toe, so I remind myself how amazingly our bodies heal and the fact I can even stand on it at all is something to be proud of.

It's the same when I wear heels when I go out. My favourite boots are not that high, and I normally feel quite balanced in them, yet sometimes I can stagger and wobble as I walk. (Actually make that frequently! 😂)

Yet I accept this issue better. Maybe as it is most often only when I am tired, stressed, or carrying something. But also that when I was a teen I had my toes pinned, the tendons cut and so lost sensation from them. So I have never had great balance in heels since. Needing to wear boots as my ankles are very narrow never helped much either. So wobbling in heels is something I have done for many years! 😬 Although I do wonder how much my balance issues for many years were caused from my head after all?!

Anyway, when I went to Arundel Castle last week I realised that my balance was probably better than many people's. (see my previous blog about the steps!) I just need to be sensible as I know I can wobble if I turn quickly, or look up etc.

I also have had some Bowen Therapy recently (from Alison at www.bowenarrow.co.uk) and I wonder how much that has helped me in the fact it has realigned my body better? I have felt better in general since I went... 😊 I also had some treatment from Alison just after my surgery and I especially felt it  helped realign my neck where the muscles had been cut, as well as my body in general. It stopped my neck leaning to the left - even when I felt it was straight,! Plus it also helped with the dizziness and coordination. Maybe it has just helped my body heal again to another level?

So when I have used the balance beam the last few days I have felt better at it. I have managed to stand and turn looking around without falling off. 😊

No doubt I will wobble again and some point soon, but I will remind myself to not stress about it. 😬

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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?

.