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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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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Comparing Recovery Isolation & Corona

We are now almost 3 weeks into being isolated at home. My husband and I both started feeling ill on 16th March, spent the next day in bed. No it wasn't romantic, we both were feeling full of flu aches, with temperature, headache, nausea, dizziness, fatigue and me constantly coughing.

Two or three days later our two older children then started feeling ill, mainly with headaches, body aches and a temperature, so I had to try and get drinks for everyone, cook dinner etc while really not feeling up to it. I decided then that having a brain tumour was actually an advantage as it meant I was already used to cooking and doing chores when I felt dizzy and fatigued with more than a bit of brain fog! 🤔😬

A few days into our illness, the UK went into lock-down, so we couldn't go out anymore anyway. 

My husband was basically ill in bed, or the last few days dragged into the sun lounger in the garden to get some vitamin D, for 9 days. It took us both about 2 weeks to even start to feel normal again and cook without feeling totally exhausted after, even though we then lost our sense or taste and smell and still felt tired. 

At some point, or two, my husband complained about how slowly he was recovering, how fatigued he still felt, and how slow his brain was working... each time I laughed! I know I shouldn't but I did say to him, "Now do you understand?"

Almost 3 weeks later we are still a bit more fatigued than usual, I'm still coughing but otherwise things are back to 'normal'. Whatever that is now... 🤔

I know I have read someone else talking about there not being much difference being isolated after brain injury to Corona lock-down a couple of weeks ago, but now we have had 3 weeks of only going out twice to get food and I wonder ... 

Is getting over brain surgery any different to this forced isolation? 

The only more negative things now is it takes me ages to get a shopping slot online and it's not even guaranteed I will get one, half the products I want are out of stock, food costs me more money, some of the places I shop from are closed, or only open for short periods, and post is taking ages. I also can't go to visit my parents and the garden centre is closed. I am also missing my weekend escapes of going to my husband's gigs. 

It's also the same in that once again my family have no income. Last time it was as my self employed husband had to look after me, this time as all his work has been cancelled. We are used to living on tax credits. We have dealt with it before, we will do so again 💜 

On the positive side... I only felt ill for a week. I was able to walk the dog again after 9 days not 90. We have been able to tidy garden, plant seeds - all nicely growing me veggies, sort house, finish off building a recording studio for my son, put up shelves and make things and have even ordered paint to update the hallway. I have time to sort out and now need to list the 100s of books I want to sell. We have a pile of items to take to the tip or charity shops once they are open again.

And, most importantly, this time others (even those than have not been ill with Corona) UNDERSTAND how you are feeling. 

Isolated.

Thing is, 

I had already been forced to get used to it. 

Now its almost quite normal ...🤔😬

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What Do I Wish my Family and Friends Understood After I had Brain Surgery?

Being diagnosed with a brain tumour, only having one appointment my neurosugeon before surgery, not having any other information other than this meeting, yet being told I needed 'urgent' brain surgery and then having the operation brought forward as even more urgent... all within a month of finding out about I had a brain tumour. I had not had much time to register what was happening.

So when I left hospital (which was only 48 hours after the end of surgery) I was in shock.

I felt violated. 

Confused. 

Trying to work out 'why me'? 

Still terrified. 

Not quite believing it was over. 

Yet elated I had survived.

I felt extremely vulnerable and delicate. My head and neck felt so sore. I couldn’t lean on it, much less sleep comfortably, I needed propping up with pillows, but I could barely do it myself. I felt like a newborn. Everything felt slightly numb.

I couldn't cuddle my 9 year old son, I couldn't even have his weight on my shoulder as it hurt my head and neck so much. I desperately wanted to continue to mother him as before ... but I couldn't. I had to fix and put myself first. Not something that had happened since I started parenting.

I also had all three of my older kids taking qualifications (GCSE's, BTEC and a Degree) yet I could do nothing to support them. I knew I had to put me first. Anyone offering support for them was extremely appreciated.

Then there were the physical effects that I needed to get used to:

My vision was awful, everything was a bit blurry. Plus I felt my world was constantly spinning. I couldn't watch TV to relax as it made me nauseous, it was worse looking at a computer screen. I could manage to send a short text and that was it, I would have to stop and let the nausea subside.

After a week or so I was all but begging for the dizziness to stop, 

to be able to eat dinner and see the spoon go in a straight line to my mouth, not feel like I was eating on a fairground ride.

(I have written about the other side effects I had previously, please see The After Effects of Brain Surgery and Cerebellum Surgery Side Effects)

Household noises such as the washing machine were too much, even a games console whirring was too loud and constant. I couldn’t cope with too many people talking.

Lights also hurt, the light coming through Venetian blinds was in lines and felt like it was flashing! My brain couldn't handle any stimulation.

I spent ages with my eyes shut!

Doing anything was hard. Even walking to the toilet was tough. It hurt to move, I needed someone to walk with me.

I struggled to sit on the loo seat correctly, my body felt fuzzy and so I had to double check I was doing everything ok. Remembering to flush the loo, wash my hands and dry them seemed to be a lot to remember in order.

Trying not to wobble or trip over something, or even just navigate the corners and turning to shut the door.

Finding the right words was also hard, most of the time I could say what I felt relatively well (albeit a little slowly), but try and describe something or give instructions of any sort (where memory came into it) was awful. I knew the thoughts were in my head, I just had to access them and this wasn’t a fast response time.

I was terrified on feeling so ‘out of it’, especially when I got tired. Each time I needed to sleep I had to trust that I would be OK, and it was ‘just’ tiredness and not that I was getting ill or having a seizure or blacking out.

The first couple of nights after I came home, I made my husband just hold me as I kept dreaming of a horrid metal taste in my throat and the feeling that someone was putting a tube in it!

Waking up left me extremely groggy. It took a while for my brain to wake up, and even longer for my eyes to do the same.

I would often lie there with my eyes shut for a while after waking not even realising I hadn't opened them yet.





I wanted someone with me 24/7. To calm and reassure me when the pains were too much or I felt dizzy (I was so scared I would fall over or have a fit) … and also wanted someone to just listen.

Please just listen.

You cannot put it right or change things, 

but just listening and understanding helps SO much. 💜

It was great to see people visiting, but also, I couldn’t stay awake for too long. I needed a morning and afternoon nap (for an hour or so!) for months, if I didn’t then I felt awful and got really exhausted later.

For several days, even weeks, if I tried to do anything even as simple as ordering online shopping, going to an appointment to remove staples etc- it just wiped me out. Physically and mentally. Even months later going to one place a day was more than enough.

As I had barely been able to move off the sofa for months, my body strength and muscle mass was bad enough that even walking for a short distance was exhausting. I just had to build my strength up slowly. Very slowly!


Even months later I was still unable to think clearly, or for long:

 The brain fatigue lasts for not only for months, but years...

I finally feel I am seeing positive improvement three years after my surgery.

I am now able to stay awake for a full day and even go out for the day without having to 'pay for it' later with being extra fatigued.




Yet still, if I have got particularly tired or stressed, my brain starts to 'switch off' again.

I cannot find words, I stutter, I cannot think clearly or make decisions, and my balance and coordination goes with it.

I may act it... but... I am not drunk!!! 

Even though my surgery was in my cerebellum, it effected so many of even simple normal day to day tasks. I could barely read my own handwriting, and hardly anyone else could decipher it!

I struggled to help my son with 'school' work, I couldn't read things out loud correctly, I couldn't say them correctly either.

I felt like my brain was failing. 

I felt like a failure - to myself and my family.

And even three and a bit years later...probably the hardest thing to 'get over' is the fact that:

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