Advice for cerebellum bleed

[Cornishwaves247]

Hi all ,

I have wrote a few times now, probably going on about the same stuff...

I'm month eight into my cerebellum rebleed which took place June 2017. Its driving me insane as I really want to be fixed now. It bled due to me having an AVM, first bled in 2015 October., though I overcome the symptoms in the first couple of months and was just left with building my stamina up, which took 2 yrs. This time it's much worse, poor or no balance, poor walking, poor vision and a inner body sway. What are people's experiences on this type of bleed?

Thank you for your reply in advance

Jo

[cat3]

Hi again Jo. I think we're only as good as the distance between now and the last bleed. But even then, everyone's different and whereas one person might be back at work at the 12 month point, another will be stuck like the bleed was yesterday.

I'm 6 years on and still plagued with poor balance ; have to 'hold onto' the walls when getting out of bed and I know I must look drunk when out walking. I think no matter where the bleed occurs the symptoms are much the same............poor memory & balance, headaches and light headedness etc.,etc.

I hope you'll gradually start to manage your symptoms as time moves on. It's a pity you had the re-bleed as you'd already put a couple of years between you and the one in 2015 and, for me at least, the 3 year point seemed to be where I reached an equilibrium.

Hold on m'dear and try to avoid looking back. We need to focus on what we CAN achieve and not what we've lost............

Love Cat x

[Cornishwaves247 in reply to cat3]

Hi cat,

Thank you for your reply. You always have good outlooks on these situations. Your always so positive. We need more individuals like you in the world 😊Xx

[cat3 in reply to Cornishwaves247]

Thanks so much Jo ! xx

[Prettythings1]

Hi Cornish

i had a massive bleed caused by an AVM in 2006 when I was 21.

The AvM was very deep they removed my skull to relieve some of the pressure and drained some of the blood

There was a lot of damaged caused by the bleed

Field vision problems

Fatigue

Epilepsy

Totally paralysed my left side, it took my 6 months to learn to walk again, I have a very pronounced limp and balance problems.

Mu left arm is still paralysed I never regained any function, this meant I had to learn how to do everything one handed from washing my hair to changing my daughters nappies. Theres few things I have not been able yo manage lucky I guess

I don’t work at minute as on maternity leave I did work as a high schoolteacher.

I had two lots of stereotactic radiosurgery to treat the AVM it Worked after the second treatment and has completely gone and I have now bern discharged.

Thats my experience then......

You sound what you are doing well what have they done to treat your AVM?

[Cornishwaves247 in reply to Prettythings1]

Hi,

Thank you for your reply. I have an AVM deep in the cerebellum. I had stereo tactic radio January 2017. Was quite a long session 2 hours 40 mins I think. I’m getting scanned end of March to see the progress I’m hoping it’s all good. My re bleed happened June 2017 I was super unlucky but at least it happened sooner rather than later . You sound like you have been through it especially having children to look after. I am getting there it’s just a super long journey but at least it’s happening I guess. Good luck with now forward it sounds like you are coping with it as well as you can 😊 did you find it all super slow in fixing? I just want to be near on fixed now.... have you any recovery suggestions xx

[Prettythings1 in reply to Cornishwaves247]

Well they say stereotactic surgery takes between 2-5 years to work I had two lots of treatments to completely obliterate my AVM.

Its nice knowing it’s gone though

i am a very positive person just try to deal with everything in a positive way!

How old are you if you don’t mind me asking?

X x x

[Cornishwaves247 in reply to Prettythings1]

37 now. Was 35 on the first bleed and 36 on the 2nd. I'm trying to stay positive but it's dam hard.. I truly believe I will get through this, it's just very slow. ☹️ but it is happening 😊. Did it take you a long time to recover? I'm in my 8th month now and feel there is still a way to go I'm hoping it will click together soon xxxx

[Prettythings1 in reply to Cornishwaves247]

I never fully recovered just learned to accept and live with new me as physio stopped 2 years after

[Cornishwaves247 in reply to Prettythings1]

Oh really, you sound a positive individual. It's a shame you are still living with the side effects. At least you are strong enough to battle on... I'm hoping that I can overcome this and make a good record 👍 here's hoping

[Prettythings1 in reply to Cornishwaves247]

Its still early days for you, time helps in its own way

Just got to keep going haven’t we x

[sealiphone]

My first AVM bleed was November 2002 Gamma Knife in Sheffield January 2003, second bleed June 2004.

Sheffield consultant had told me a second bleed would probably kill me and life expectancy 11 years, he then asked did I want treatment (I think this was a cognitive test!).

I think the all clear came end of 2005.

[Prettythings1 in reply to sealiphone]

Oh gosh how old were you at time, I had same treatment in Sheffield too!

First gamma knife 2007 only worked 95% so had it again 2011 to get rid of last bit but done now

[Cornishwaves247 in reply to sealiphone]

Hi,

How was your recovery from this treatment? Did u struggle with any symptoms? I'm struggling a bit but will battle on as it can't be like this forever

[sealiphone in reply to Cornishwaves247]

I didn't notice any effect from the treatment, my symptoms were unchanged but continued to improve until they stabilised around Spring 2005.

[LindaHannah]

Hi. I cannot add to the comments given, but I wish you all the best in your recovery. Lots of love. Linda xxxx