Time scale for a cerebellum bleed

[Cornishwaves247]

Hi, had a cerebellum bleed back in June 2017 it’s now pretty much February 2018 and I’m still struggling with the main issues being weird vision but not lost, poor balance and poor walking well I’m currently re learning this. There is no help or advice for this kind of bleed, so I’m hoping someone on this site can help...there must be something I can do to help with recovery? I also get weird inner body sensations like my inner skeleton is spinning/shaking/vibrating/wobbling etc. When is this going to stop? It’s all driving me insane! Please advise, thank you

[lcd8]

HI Cornishwaves. I'm so sorry to hear about your cerebellum bleed. It must have been/be dreadful for you to be left with the deficits you have. I have an AVM of the Cerebellum and know that rupture would result in a bleed there. The stupid thing is un-treatable without deficit though so I have been advised to leave it be. Fortunately for me it hasn't bled yet and I am hoping it never will. However it did cause a stroke mimic back in 2016 which caused balance issues and left-sided weakness. I had a great rehab team though who gave me all sort of exercises and things to build my confidence with walking (which was also damaged).

[Cornishwaves247 in reply to lcd8]

Thank you for your reply. It’s very small steps moving forward but at least it is moving in the right direction I guess.

[Matt2584]

Hi Cornish,

I have had 2 brain tumours at the back of my head. I still have one but it is inactive as far as I know. I had radiotherapy on my 2nd tumour and about half the way through my walking balance was terrible, it took my mum and dad to hold me upright.

Anyhow, scans were showing that the tumour was not shrinking but instead pulsing/throbbing and the reason why was because I had some sort of fluid inside the tumour.

Because of this pulsing, the tumour was causing pressure to the cerabellum, the part of the brain that controls motorbility/walking/balance and so on.

Sorry to hear about your cerabellum bleed. What caused the bleed? If I may ask.

Take care,

MJ

[Cornishwaves247 in reply to Matt2584]

Hi Matt, I had an avm which bled. Thank you for replying to me. You have an interesting case. I'm sorry this has happened to you, especially in the cerebellum. It's a complicated part of the brain, well it's all complicated! X

[cat3]

Morning Jo. I had a bleed in the frontal lobe 6 years ago and still have mobility/balance issues amongst others. I've had very little by way of aftercare and had to fight for the little I have had, which is a 12 monthly consultation with a neuro-consultant.

Have you contacted the Headway helpline for advice ? Their number is 0808 800 2244.

Your vibration sensations sound like neurological symptoms. I was watching TV one night (long before the bleed) and kept looking out into the street to see if there was a heavy vehicle or some sort of vibrating machine as I could feel my insides shaking.

My daughter assured me there was nothing and, realising it was within me, I spoke to my GP soon afterwards who, as I was also having panic attacks, referred me for psychiatric assessment. The psychiatrist explained that the symptom was neurological, and probably a reaction to the recent death of my mother. I was prescribed an SSRi and the symptom abated.

There may well be a different cause in your case Jo, but whether it's an after-effect of the bleed, or stress related, the resultant symptom can be similar and, hopefully, treatable.

Ask your GP for a referral to a neuro clinic.

But many symptoms, such as short term memory loss/motor issues/tinnitus............I could go on ! - might well persist and will need to be 'managed' and worked around. It took me around 2 years to get to grips with coping mechanisms, but life is OKish now for me, most of the time (even good sometimes !) It's a big challenge for most people...........but acheivable given time.

Best wishes to you, Cat xx

[Cornishwaves247 in reply to cat3]

Hi Cat, thank you for your reply. I did email headway the other week but still waiting on a reply.. 1st feb marks month six of me being at my parents home or month eight from the day it happened. Im getting fed up now, but I Guess that’s expected

[cat3 in reply to Cornishwaves247]

Welcome to life in the sl-o-o-o-ow lane m'dear ! It's probably the invisible nature of the beast that means we spend SO much of our lives waiting- - - - - - -for appointments/treatment/support......... 😫

All the more reason for getting things moving ASAP ! Good luck in gee-ing things up Jo. xx

[Cornishwaves247 in reply to cat3]

Thanks cat 😊 it's very slow moving but at least it's moving I guess. Give it time and I will get there..... I hope 😂 x

[Gaia_rising]

Hello, Cornishwaves247 from a fellow 'wobbler', I've just read cat3 's reply, and the 'heavy vehicle passing' resonates (pun intended) with me, too. Most of the time, I feel like I'm standing too close to some sort of heavy industrial machinery, one of the many things I've absorbed into my 'new normal', almost 3 years after my original haemorrhage, and coming up for two years after the second round of elective surgery on my 'Superior Cerebellar Artery aneurysm.'

The SCA aneurysm didn't rupture, and, from memory, it was only something like 7mm, but I now have a lumps of metal in my brain where there wasn't any metal before, and it's taking some working around. After the initial haemorrhage, I had visual disturbances, which my Consultant said 'might settle over time', I think they like saying that, it sounds more encouraging than "Nope, haven't a clue why THAT'S happening, brains are weird." We're all different, and we all recover at different rates, to different extents.

My visual disturbances are worse when I'm tired, stressed, or at specific points on my menstrual cycle, but they're always 'there' to some degree, My optician suggested that 'Pizotofen' might be helpful, I did look it up at the time, and think it's a medication used in some types of migraine, but I never got around to my GP actually listening to what I was asking him, then my life took a bit of a turn for the worse in general, so I didn't chase it. What does help me, for no reason I can explain logically, is anti-histamines. I'm allergic to two types of pollen, so usually take Loratadine from the end of February to the start of September. In September 2016, I stopped taking the Loratadine, and my eyes went MENTAL, from the 'flicker' that I can just about work through to full on disco light-shows, it was horrible. The only change-factor had been stopping the Loratadine, so I started again, and it's mostly bearable again.

As is ever the way with brain injury stuff, while ever we're managing to get our shoes on the right feet (first time, on good days), nobody can really 'see' what's going on inside, and, when we're sometimes brushed off with "You survived, some people aren't that lucky." some of us stop asking for help. If your symptoms are making life difficult, you need to approach your GP, for re-referral to your neuro teams. (GPs are not brain specialists...)

Nobody on here will be able to give you a 'how long' or 'when' answer, we're experts by experience, but only our own experiences. Some of the side-effects wear off in time, but none of us can say 'how much' time, we can only relay our own experiences. Some of the issues don't go away, it's not so much a case of 'getting better', as getting better at dealing with them, avoiding triggers or specific environments, or forward-planning a 'rest period' if we know we're going to have to do something that will drain us.

No answers, I'm sorry, but you're not alone.

[Cornishwaves247 in reply to Gaia_rising]

Thank you for your reply. My head sensation seems different to urs and cats, I don’t feel like there is industrial machinery or vehicles near by.. I just can’t get to grips with how slow recovery actually is... least it’s moving forward 😊

[lcd8]

Great message Gaia_rising. We really are all different and no two BIs are the same. That's why it is so hard to get information - even out of neurologists. I have long since given up asking my GP anything about my condition as she just doesn't have a clue.

[lloydyuk]

Hi, I had a spontaneous cerebellar haemorrhage that extended into the ventricals 5 years ago. It was caused by a long term autoimmune condition that affects my blood. I also suffered kidney & adrenal haemorrhage which caused damage and resulted in me having Addison’s disease. In addition I had hydrocephalus & ventriculitis and a few other bonus things too! It’s not much comfort now, you are very early in your recovery though. It takes time, do tour best to be patient, keep working at things repetition was the key for me...unfortunately it’s a life long journey. Never give up, be your own best friend though. If you do it right you’ll see the true value of life and what really matters clearly. Best wishes to you. Be a warrior!