Tuesday 30 June 2020

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! ๐Ÿ˜ฌ

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!!๐Ÿ˜‚)  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. ๐Ÿ˜"

"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'.๐Ÿ™‚"

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! ๐Ÿ˜ฌ
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 ๐Ÿคจ I've certainly had a few days this week of thinking will this go on forever? ๐Ÿ˜ข
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 return๐Ÿ˜•
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. ๐Ÿ˜ข"


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! ๐Ÿ˜ฌ๐Ÿ˜„)

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.๐ŸŽ”

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





Thursday 25 June 2020

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!  

Saturday 20 June 2020

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,๐Ÿค”
Maybe I should accept this feeling more? ๐Ÿ˜‚

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. ๐Ÿ˜ฑ 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. ๐Ÿ˜ฐ

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 ... ๐Ÿ™ˆ What the hell was I thinking? ๐Ÿ˜ฌ

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!๐Ÿ˜…

Eventually after midnight I felt calm and safe enough to go to sleep and not feel it would be the last thing I did. ๐Ÿ˜ฌ

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 ๐Ÿ˜ฉ

The only positive is that I know when you keep getting reminded of hell, you appreciate the light again better...๐ŸŒž

 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. ๐Ÿ˜•

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. ๐Ÿค”

I might just not take as much next time! ๐Ÿ˜


Wednesday 10 June 2020

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. ๐Ÿ˜ฌ

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... ๐Ÿ˜ถ)  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 ๐Ÿค” 

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. ๐Ÿ˜”

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. ๐Ÿ™๐Ÿป

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 ๐Ÿค” (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 ๐Ÿค”

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.๐Ÿ™๐Ÿป

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 ๐Ÿ™„, 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! ๐Ÿ™„

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. ๐Ÿ’œ

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. ๐Ÿ˜ž

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. ๐Ÿค

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 ๐Ÿ˜ข

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 ๐Ÿ˜ฌ

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