I was asked where marks bi was

[debbie36a]

He had a right sided fronto temporal partial craniectomy and removal of temporal contusion

I've quoted that from the letter from hospital x

[Kirk5w7]

Inside his skull is the answer, that's where the scars are. I've had to say that to people too." If you could see the scans you'd see the dead parts"" tends to be a conversation stopper but these people are ignorant and insensitive xxx

[StrawberryCream]

Hi Debbie

I think I was one of the people that asked you that question. And what you have quoted from the hospital letter explains a lot of Mark's difficulties because it is his frontal lobes. If you ring the Headway Helpline they will send you the relevant booklets that will help you understand why he is behaving, responding and reacting in the ways that his is or you can download some helpful info from there website. It is not going to make things any easier for you other than hopefully helping you to have an understanding that his manner etc are largely out of his control and not a personal attack on you. Has he had neuro psych testing done to ascertain exactly which of his frontal lobe/dysexecutive abilties are affected? If not please do seek a referral for an an assessment by a neuropsychologist.

Thank you for sharing that info.

My thoughts are with you. x

[debbie36a in reply to StrawberryCream]

Still waiting for neuro phycologist they are short around here!

Oh believe me I'm shouting about that fact. It's terrible waiting 6 and a half months.

I'm making myself heard as it's so important we get this help. Xx

[StrawberryCream in reply to debbie36a]

Yes I agree there is generally limited availability of neuropsychology unless you live near one of the hospitals that have large specialist departments. I did have neuropsychology testing about 10 months after discharge but in my area the service was very limited and I didn't get any apts to support me or help me learn the strategies to manage the identified difficulties so still struggle to manage myself, my reactions, irritability and anger etc etc. I am now 4+ years on and still needed neuro psychology input but it isn't available in my area. It does seem to be a postcode lottery as to what people get.

Hope when you do get it, it is an excellant service and professional.

[Hidden]

Hi Debbie,

A little about me.....I had a brain haemorrhage 2008 (caused by an AVM) I spent weeks in various hospitals. I had to re learn how to walk, talk and eat. Long story....it took 4 years before we got the appropriate help. The best help we got, was from a neuro pyschologist, who helped me and hubby immensely.

In the early days l was unresponsive, hurtful, emotionless, argumentive (always thought i was right...always wrong though!!!but it didn't stop me thinking I was right)

Told husband to leave me (married now for 36 years..childhood sweethearts) and even smashed all I could in our lounge at home.

Debbie I could go on, but I hope this helps you see that Mark and you need help just like we did. We now live life with my brain injury and taking everything in to consideration YES its different but my god it's GOOD.

Everything we do...at home, holidays, a night out etc.....

We have a "Motto" How well and safe can we do this with my brain injury. And will WE both enjoy whatever it is WE do.

And all considered we do plenty and ENJOY 👍

Take care Debbie

It will get better......scouts honour 👌😃

[lcd8 in reply to Hidden]

Hi Hannah5. I also have an AVM but mine is unruptured and untreated. It is way down and embedded deeply in my brain and treatment would be very invasive (and probably not overly effective) So I have not had any so far. Please could I ask if you were aware of your AVM before your haemorrhage?

[Hidden in reply to lcd8]

Hi Icd8,

I am a young at heart 56 years. My AVM bleed happened when I was 48 years old. To answer your question....I was not aware of the AVM

The surgeon said the AVM was a birth defect and it had taken 48 years before causing me a problem.

The AVM is deep in the cerebellum part of my brain, that's were the haemorrhage happened.

Hope this helps, but please ask any questions you wish to

Take care

Joanne

(HannahS is my log in name)

[lcd8 in reply to Hidden]

Hi there Joanne.

Thanks so much for getting back to me. I am 42 and have known about my AVM since I was 24. When I was 12 it caused a secondary complication and I have been hospitalised several times for that since. It was only when in my 20s that scans were advanced enough for the doctors to see that what they previously called a 'birthmark on my brain' was in fact an AVM. It is true they form during foetal development (ie in the womb) though. So AVM-ers are born with the condition. But sometimes (as in your case) they don't show themselves for years. I understand about 50% of patients present with a haemorrhage, having never known they had an AVM.

My AVM is in my Cerebellum too!! It doesn't cause me much hassle day to day. But of course I'm always aware of the risk of rupture. I have been told I would need at least 3 embolisations and Gamma Knife radiation to treat it due to location and size though. So far I haven't gone through with it as I am scared it would give me deficits I don't have now. AVM is very rare so many people haven't heard of it and advice is scarce. In addition to this one I am a member of a forum called AVMsurvivors.org which you might find useful.

Take care and all the best.

Lulu

[randomphantoms]

Thanks for sharing that Debbie

You have already had some really useful replies. All I can do is reinforce the suggestions to contact Headway and to keep fighting for the neuro psychology.

Lovenhugs

Xoxo

[MXman]

Hi Debbie,

That word contusion or contusions rings bells with me, my consultant said I have 3 contusions on my frontal lobe and I played it down very quickly. Little did I know it was pretty serious.

I love what you said Kirk "inside the skull" if only people knew and could see what was going on inside sometimes then maybe I wouldn't have to try and explain. My wife and I were talking last night and she said I still have many Bi ways about me there still there. I replied well they won't go away as I'm now the new and improved version, shes not convinced of that.

I find going out and socialising difficult and struggle with it and try and avoid it loved what Hannah said "How well and safe can we do this" I'm a work in progress and learning every day but will not put myself in situations where I feel uncomfortable as I know it will end badly for me and I wouldn't want it to effect my wife either or my kids. I now know when the brain fatigue kicks in as iv learnt to recognise the symptoms, ratty and argumentative, then I have to rest. Its getting better though.

Have a great evening. XX N

[steve55]

this may sound aweful but the aggression mood swings unpredictability i can deal with because i dont know im being like that.

what i do find hard is crying uncontrolably for no particular reason

i hate because i know its happening because i can feel the tears rolling down my cheeks.

has this happened to mark

[debbie36a in reply to steve55]

No that hasn't happened steve55 if anything he's harder to be honest