I was warned before surgery that I would get side effects, it was made perfectly clear that my head would never feel the same again and so every day the symptoms remind me I am alive and to be grateful for that.
(The symptoms I have in my head I wrote about previously here.)
Here is a list of the other things I struggle with 21 months after my craniotomy:
I still often feel uncoordinated
I drop things easily, cannot easily turn my wrists whilst holding items (e.g. Turning a key in a door while holding a bag is not easy), typing or writing can be a physical struggle to get the correct letters typed in order or written in the right shape. I still struggle a bit when I paint (and I am not doing anything detailed) … a couple of weeks ago I managed to tip a whole bottle of liquid acrylic ink right in my lap. As I stood up it ran down my legs all over the floor! Don’t ask me to catch anything -
I will probably break it!
I still feel I easily lose my balanceI cannot wear thin or high heels at all as I literally feel I will tip over, but even when I am wearing flat canvas shoes I can wobble if I do something too quickly, I always have to keep one foot firmly on the ground. I feel I wobble and stagger to the side if I open a heavy door, or I get bumped into. I cannot easily or quickly correct myself. I often still feel (and think) I look slightly drunk! Although my husband has told me I don’t look wobbly when I walk anymore.
I know I often muddle words when I speak!I can say a similar word instead of the one I mean. Left instead of right, (Sorry if I ever gave you directions…) or sold instead of told. Sometimes I realise and sometimes I don’t. I say phrases that are totally wrong-
such as calling Spaghetti Bolognaise, ‘Yorkshire Pudding’; or ‘can you put it in the dishwasher’ instead of ‘in the dryer.’ Or some strange response where I say something like ‘I need to water the plant as it’s dead’ when what I meant to say was ‘I need to water the plant as it’s dry’- just that my thought process has jumped a step ahead in what the consequences may be. (This might be ok with plants, but not always as good with people..!)
I often type or write words incorrectlyI write ‘on’ not ‘of’, ‘wesbite’ not ‘website’, repeat words and not notice at first, or add words in the wrong place in an already part written sentence, or completely miss words out. I cannot spell anywhere near as well as I could beforehand, I often have to phonetically sound a word out and even with spell check still end up Googling spellings and meanings. I often know there is a word that describes what I mean, I just have to explore words similar to it in my head to find it! Even when thinking of names or words I once easily knew I can end up thinking of similarly linked items or words or names starting with the same letter to get there.
I cannot multitask.If I am listening to music and talking, I end up saying a word I heard in the song instead of the word I wanted. If my son asks me even a simple spelling when I am watching or doing something, I have to stop before I can think correctly enough to spell it. When I try doing both, he laughs as I totally miss letters out or say the wrong ones! I can’t cook a complicated meal or do anything where I have to think and also hold a conversation. I know I saw a cognitive test where you had to list alternate types of objects, such as a fruit, then a type of job, then another fruit. I start ok, but then after 4 or so or each I seem to just stop, I cannot remember which words I have used and somehow switching back and forth from the type’s just means I go blank.
I forget thingsWords, spellings, if i have told someone something previously (I often now ask ‘did I tell you?’ first), details of things, to call someone I need to, things I need to do, leaving the hot plate on… (and then going out!)
My eyes can feel unfocused and blurry close up.When I wake it sometimes takes me a while to feel I can see properly. I have been told by my neurosurgeon that any eye problems are not related to my tumour, and 2 different opticians can find no problems but I still feel my eyes are a bit like they were before surgery-
I assume from when the brain fluid was building up and causing issues? (As tumour was in cerebellum) and I do wonder if this caused some kind of eye damage? But it also could just be getting older?! I was 42 when I had surgery and opticians all seem to say it’s in your 40's when the eyes often start to deteriorate.
Bad Days.Some days I wake up and shower yet even in this short time I know it will be a tough day. I don’t feel fully ‘with it’ in a similar way to when you have a bad cold and feel groggy. (I think it’s similar to being hung over, but I haven’t drunk alcohol since I was 18 so can’t really be sure.) Then I constantly drop things, leave taps on slightly, and struggle with my speech more-
yet other days I am almost completely unaware of anything being wrong and feel organised and productive. Thankfully these bad days have decreased quite a lot since surgery.
Hormones.I have also realised everything above is worse the week leading up to my period-
for a while it scared me that the tumour was coming back as I would feel very slightly drunk again (this was my main sign of the tumour and so even a wobble scares me) Then I realised it happened each month and the symptoms went off in between! (I also had severe headaches with my periods prior to surgery - although the surgeon said it was not a hormone receptive tumour, but it was probably just as my body was 'lowered' at this time.)
Cold weather also seems to cause similar worsening of symptomsI have to keep my head covered or I feel wobbly again (Although this was something that also used to happen when I walked my kids to school 15 odd years ago-
I wonder if this is just how I was, or that it was there causing minor issues 15 years ago?)
Then sometimes I am just totally exhausted.I could happily spend the day in bed and even the thought of putting the washing on the line is enough, and cooking dinner where I have to coordinate it too, will have me in tears of exhaustion. Sometimes if I have done too much this can last several days in a row.
Although within the last year, I have found online others who had a Hemangioblastoma, most of them also in the cerebellum. We all seem to say similar things, both from what happened to us before finding out, to the surgery and the after effects since. Some have had far worse symptoms than me, and constant pain or damage, and some a few less than I have written above, but it seems most of us are very similar.
I was told most of the recovery would be within 2 years of surgery but I also know the brain can still heal, albeit at a slower rate, after this time. I am keeping up the supplements that I feel will support this. As well as listening to my body so I know when to stop, relax or push myself on.