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Dave 21 and a thanks to the NHS staff
Comments
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Well...
I would just like to say a few things.
(Only continue reading if you have an interest in the human brain. It's a long post)
For the moment, I am basically pretty close to just being back to my old self. It's a temporary thing, but I might as well just get on with it and appreciate it for now.
When I say "returning to my old self" My old self isn't really that great. It's mostly just a bit of a quiet person that often feels like they cannot really be bothered to socialise. Maybe a bit of a "I'm going to refuse eye contact" misery guts kind of bloke.
It's almost like ...I was maybe a tad happier and internally more hard working and caring only a few weeks ago just because my memory was particularly poor and I almost sort of forgot about quite a few negative memories that I'm now sort of already a bit reluctantly bored and sick to death of.
At least I'm maybe a bit more self aware now and can actually acknowledge some things a bit more.
I have learnt quite a lot recently and this particular outcome has helped me to understand more things about humanity in general. I don't think I will be quite as stubborn and awkward as I generally felt like I was before.
This experience has not been a constant living hell. It has simply just been a bit "sorry, I have no idea what you are talking about, that sounds absolutely ridiculous...is this a weird dream or slightly stupid episode of Hollyoaks"
I was only recently told that I was born with an inevitable stroke. That is the wrong way to describe it but it's the best I've got for now. I have been confused with what this illness actually is since I woke up in hospital over a month ago.
My bad memory still needs some daily work.
Every now and again...I forget some words or phrases....then I remember them perhaps a minute or so later.
I had a test earlier and actually did a tiny bit better then the average score of people that don't have the issue I have.
That felt sort of nice and it was a bit of a relief. I'm not going to go into too much detail about how flipping gorgeous the teacher was.
But f*cking hell.
My legs were wobbling when I 1st saw her.
It's like tangled hose pipes. My brains capillaries, arteries and veins had a bit of a clash at birth...and they have always been naturally tangled in a certain way. (Upper right side of the brain) So they have built and caused a minor block that stops fluids and or oxygenated blood to reach the tissue. It's currently working as normal now....(of course it is, otherwise I wouldn't be writing this post)
At the moment it still sounds a tad complicated to myself. Someone else might be better at explaining it with a bit more depth...but if you was looking at me....and looking towards the left side of my head, from your perspective...you are looking at the side of the brain that had the short term stroke (so I went a bit mad for a while and collapsed on the floor)
If someone has the ability to explain this with more depth and accuracy, then please feel free. AVH is what it's called (I think)
I'm partly doing this post because I can't sleep and my favourite nurse hasn't turned up to work this evening. (I was supposed to do this post in the early hours of the morning but I fell asleep)
I'm going to be completely blunt ...
Basically, until roughly December time, I'm fucked. Life is going to be rather sort of sour. I have an annoying and inconvenient brain operation coming up soon ish. The date of that is still yet to be confirmed.
A lot of other people have it a lot worse, so I can't complain too much...but if I was to be absolutely blunt..it most likely is really just going to be rather shit.
Still, you have to make the best of it....and that is my aim. Sometimes you've just gotta change...and or maybe get a new hobby and just get on with it.
It's quite a long post, so thanks for reading.
Charlton Athletic...sort it the f*ck out.
The whole thing is just one giant bag of horse manure and it already seems and sounds like we are more likely to get relegated then promoted this season. Probably just mid table at best. Ladies and gentlemen we are fucked.
Why can't Roland just be a younger and less naturally physically vunerable bloke so I could just scare the shit out of him...and it wouldn't be such a crime.
Roland = Charlton Athletics all time worst enemy. An old boring weird bastard that also dances.
Just leave
Yep....it's all coming back to me :-)
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You sound like you're doing alright to me. December is only a few months away so short term pain for a long term gain. Or something like that.
Keep on keeping on.
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Yep - fascinating post two litres. Keep going mate.0
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First of all @Dave2l , the fact that you can put together such a cogent lengthy post shows you are making good progress, and I hope your operation means you will be relieved of the risk of a repeat episode, making a full and lasting recovery.
Secondly, there are more ways than the threat of physical violence to scare the sh*t out of a businessman who values his good name and high opinion of himself. The way he had a rant on the phone to the Belgian newspaper editor who was first to publicise the message from ROT's visit to Sint-Truiden last weekend suggests the ROTters hit a very tender spot - and all without laying a finger on him. There are more ways than one...
So, thirdly, try to stay optimistic on all fronts, both your health and the future of your favourite football club; there are people working on behalf of you and others on both fronts. A positive attitude will help both causes!
#UpTheAddicks5 -
Best wishes 2 litres. You're sounding good to me.0
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Dave, will pop down when Dad's back from Hols.0
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Good luck
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Wow ! What a great and brave post !
Fortunately for me, I can't imagine how you must be feeling at this moment in time .
My advice , as I'm sure others have already stated, is to take one step at a time ...
BUT IF it was me in your position, I'd need to have tangible "things" to look forward to.
Regardless of whether I'm on an even keel or on a downer, I have to see something on that distant horizon that excites me ( careful!) or indeed makes the bad days easier.
For me, it could be the upcoming cricket or football season, or maybe a holiday/weekend away or even a film or show I'm looking forward to seeing....
Can you see where I'm coming from, @Dave21?
Anyway, whether this is for you or not, I sincerely hope that all goes well with your future op and that you're back, cheering on our lads and singing " Roland Out" songs before you know it.
Good luck, young man & stay strong.
Fanny
x
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Thanks for the nice comments.
Where all addicks....and one day, just one day....we will have Charlton back.
We can't forcefully tell ourselves that...because it doesn't quite work that way and it will just end up feeling frustrating.... and just a tiny bit off.
Just see it for what it is.
We are a sleeping giant....one that has really over slept, but we will wake up at some point.
The club is hurting at the moment but I do believe we have a future. May take 5 years, may take 20, may take 50.
Not quite relevant to the long term deepness of what I'm trying to say....but at least we loaned in a few players earlier which will probably help fill in a few gaps.
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A young bloke on my ward...(young people here are rare) has been here for quite a while but he doesn't leave his room and we have never met.
He also had a stroke and the after affect is quite seriously getting to him...both physically and mentally. Judging by what a nurse told me, it Actually sounds pretty scary and serious. Day to day life sounds like a much bigger challenge in comparison to myself.
He is going to need some serious TLC and will need the presence of his family and friends around him as much as possible.
F*cking hell I really am one of the lucky ones. It was all completely out of my control as well.
I don't actually really quite know what to say. If I get a chance to help him...I will. I would to help bring the poor bloke back to earth if whatever way I could.
Even if he's Millwall7 -
Does anyone have any particular knowledge regarding AVM?
I have stage 3/stage 4 AVM...and the current belief is that I'm likely to agree to have an operation which will roughly be taking place in the middle of February.
The doctor is going to need my consent....because, judging by what he said, his words, not mine....There is a "25% chance" that the operation may also actually be a serious problem in form of risk taking.
There is an apparent 25% chance that the operation itself may cause me to receive a permanent injury. Stoke, blindness, deep memory loss.
Just a few examples and possibilities. There are more.
There is a less then 1% chance that the operation will actually kill me. So, from that, it's safe to say that death would be rather unlikely.
Could I live with "a loss" of voluntary movements. Potential blindness.
No, I really honestly don't think I could live with that. I would rather just disappear completely.
May sound selfish in a certain sort of way, but it is just me being honest about that.
I've had a bit of time to think. it's honestly the most mentally changeling thing I've personally ever experienced.
My behaviour has also not been 100% acceptable recently. No crimes committed. Basically just being a bit stupid...due to fear.
I have a bit of a continuous flow of adrenaline flowing round my body at this precise moment.
It's quite hard for me to concentrate and find any information and the answers that I'm looking for.
I can and should just Google some things but this forum is really helpful....and I find just talking about it to be more useful, clear and pleasant.
Basically if anyone has anything to say or can pass on some valuable information regarding this.
I'd appreciate it.
Thanks0 -
Whats the prognosis should you not decide to move ahead with the treatment Dave?
Don't envy your decision but you'll know what's right for you and the family. Continued best wishes.1 -
Very best wishes to you both.
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Geezus Dave, I don’t envy you that decision at all. What do your friends and family think? Is there a risk of another stroke/aneurysm if they don’t remove it?0
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I have no knowledge of AVM, but I note you are mentioning only the possible downsides of going ahead with the operation. Have you also listed the possible upsides and their percentages?
Have you also listed the upsides and downsides of not having the operation?
Having those 4 lists written down might help you make your decision, and could also act as an aide memoir when you have an opportunity to discuss your options with the experts and with your family.
Only you know in your heart where your "red lines" are, although you should remember that humans are wonderfully adaptable and many people live fulfilling lives even with severe disabilities. None of us knows what lies around the corner as a result of illness, accident, or as in your case an unsuspectedgeneticcongenital defect.
Living your life with a raised adrenaline level is no joke, as many on this forum will know - in my case waiting weeks for the result of a biopsy following an operation. In your case this is going on for months and I do not envy you that experience. You have far too much time on your hands while you are in hospital to think and over-think medical things. Is there any activity which you can do which will block out other thoughts for a while? Puzzles, like sudoku? Or a hobby you could research on the internet? The adrenaline rush will return, but at least you may get the odd hour with it at more normal levels.
As you are finding, life is not binary; it is shades of grey rather than black and white. There is probably no right/wrong answer to your quandary. All you can do is gather all available information and professional advice, and then make your decision. 50 years ago you would probably had no choice to make. Be brave. Good luck.7 -
If I don't have the operation, it means I will be at risk every year for the rest of my life....WSS said:Whats the prognosis should you not decide to move ahead with the treatment Dave?
Don't envy your decision but you'll know what's right for you and the family. Continued best wishes.
It's all percentage based.
It will most likely come back to me at some point in my life....if I live between the age of 70-80.
It's 80% likely.
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Thanks that was insightful and nicely put.N01R4M said:I have no knowledge of AVM, but I note you are mentioning only the possible downsides of going ahead with the operation. Have you also listed the possible upsides and their percentages?
Have you also listed the upsides and downsides of not having the operation?
Having those 4 lists written down might help you make your decision, and could also act as an aide memoir when you have an opportunity to discuss your options with the experts and with your family.
Only you know in your heart where your "red lines" are, although you should remember that humans are wonderfully adaptable and many people live fulfilling lives even with severe disabilities. None of us knows what lies around the corner as a result of illness, accident, or as in your case an unsuspected genetic defect.
Living your life with a raised adrenaline level is no joke, as many on this forum will know - in my case waiting weeks for the result of a biopsy following an operation. In your case this is going on for months and I do not envy you that experience. You have far too much time on your hands while you are in hospital to think and over-think medical things. Is there any activity which you can do which will block out other thoughts for a while? Puzzles, like sudoku? Or a hobby you could research on the internet? The adrenaline rush will return, but at least you may get the odd hour with it at more normal levels.
As you are finding, life is not binary; it is shades of grey rather than black and white. There is probably no right/wrong answer to your quandary. All you can do is gather all available information and professional advice, and then make your decision. 50 years ago you would probably had no choice to make. Be brave. Good luck.
Life is oh so strange really isn't it.
What are we?
Why are we here?1 -
Echo @N01R4M 's advice, Dave.
Discuss this with friends, family, Consultant etc until you're sure you have the fullest picture possible of the 'should" and "shouldn't" options.
When Mr F was given his options after his prostate cancer diagnosis, I asked the main man what would be his decision if in Mr F's shoes.....That to me was the best question to ask at that moment in time and his answer confirmed what we all had thought.
I'm sure you'll make the right decision when you have all the information to hand but am concerned that you may not be in the right frame of mind to do so at this moment in time.
If February is the proposed month, then take your time in making the decision . Hopefully, you will be offered medication to reduce/take the edge off that adrenaline rush to a point where you are more able to think clearly & constructively.
Thinking of you at this difficult time but glad that you are surrounded by people who love & care for you.
Stay strong, young man.4 -
Thanks for the messages of support everyone. It has been a tough 24 hours, particularly for Dave. What a decision to make at age 29. But it would be hard at any age tbf.
But we have talked about it and the aim at the moment is to try to get some balance to it.
The whole of life is a percentage risk. Every time we get up, go out in a car, go up a ladder etc, virtually anything we do carries some element where something might go catastrophically wrong.
But while you have to consider all that, you can’t really lead your life avoiding all risk.
The least risk is to have the operation, it carries 25% element of complication, which means there is a 75% likelihood it will be successful. It may also mean Dave could leave this episode behind him and move on with his life.
The other option carries more risk, long term, and will always mean that uncertainty as to whether it will happen again.
It is entirely Dave’s decision, but the operation option is the one we discussed as being probably the only sensible percentage choice. That’s where it is at the moment.
It is still one day at a time, and live for the here and now. And he’s doing his very level best, bless him.
And once again thanks for the comments and support, it is much appreciated.
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This thread puts it all into perspective.
Keep your chin up @Dave2l . It may not be much but sending a big northern man hug.0 -
Think others have already said that you need to weigh up all the facts and stats etc and get as much expert advice. My only addition is that medical advancement is so rapid these days that is there any benefit holding off a few years to lower the risk percentage? Or is this a fixed procedure with no improvement scenario?
All the best @Dave2l.0 -
One thing that's worth bearing in mind in your risk benefit analysis of how to proceed with this, is what impact having a diagnosed but untreated AVM will have on your ability to live a normal life. Not just in terms of the mental toll of having the possibility of it going "off" again at any stage hanging over you, but also in terms of whether you'll be officially restricted from certain activities. Will it prevent you from driving, or undertaking certain kinds of work? Are you going to be able to get holiday insurance or mortgage protection insurance, or would you be considered too much of a risk for them to take on? Sorry to be a downer, but you need to have the best picture that you can of the risks and benefits of both options so you can make as informed a choice as possible of what path to take.
The other thing worth asking the doctors is if there is anything you can do to tilt the scales in your favour to reduce the risks of either option, and how much benefit they are likely to have. While they obviously can't give you any guarantees, it may help you to feel better about whatever you choose if you are giving yourself the best chance of a good outcome. Personally, I would rather take my chances with a specialist surgeon working under controlled conditions reasonably soon, than an emergency intervention at some unknown point in the future, but obviously, I'm not you. I'm sorry you've been dealt such a shit hand. Good luck with working out what you want to do.4 -
Dave, I've just googled AVM and I doubt anyone on CL could meaningfully advise you, as to whether or not you should have a brain operation.
I agree with others that in situations such as these I would ask the medical expert, what would you do if you were in my position and likely go with that.
Listen to those close to you, but at the end of the day, you have to go with what you feel is best for you.
All the very best to you.0 -
Thanks everyone.
This is a strange discription that may not make an awful amount of sense to read, but...
My mood recently has thankfully calmed down a little but.
It's almost the Curbishley expression.
"Never get too high and never get too low".
My mood is still terrible, horrible and slightly unpredictable.
It's like....I was a calm Radio wave 4 months ago.
I'm now an extremely tensed up high energy ionic Gamma Ray.
I'm very quickly going from one side to the other....and it's not really the way to live.
My mood has once again decreased....only just the short period of time while I have been writing this post.
My brain bleed is now apart of me. It's apart of who and what I am.
There is no escaping and it simply just has to fully 100% be accepted. It's the only way to deal with it.
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Dave, Karren Brady had a very successful similar operation.
In 2006, Brady underwent a full-body MRI scan as part of a medical screen, which unexpectedly discovered a potentially fatal cerebral aneurysm.[70] Doctors told Brady at the time that she had a 30 per cent chance of dying from the condition, and that it was a miracle that she had survived the births of her two children.[71] In February 2006, she underwent urgent neurosurgery to prevent the aneurysm from rupturing. She made a full recovery, and was back at work about one month later.
https://en.wikipedia.org/wiki/Karren_Brady
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@Dave21 only just catching up with this,
There isn't a right or wrong answer/decision here, there never is when we talk percentages and why it is such a hard decision to take.
I have a very small knowledge of what AVM is, they tested my dad for it (although turned out to be a stroke/dementia).
Is it worth a second opinion/see another specialist just to get another point of view? I don't know your personal situation, but what do you family think/say?
Feel free to come and vent on here, we're all listening.
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Hi DaveDave2l said:Thanks everyone.
This is a strange discription that may not make an awful amount of sense to read, but...
My mood recently has thankfully calmed down a little but.
It's almost the Curbishley expression.
"Never get too high and never get too low".
My mood is still terrible, horrible and slightly unpredictable.
It's like....I was a calm Radio wave 4 months ago.
I'm now an extremely tensed up high energy ionic Gamma Ray.
I'm very quickly going from one side to the other....and it's not really the way to live.
My mood has once again decreased....only just the short period of time while I have been writing this post.
My brain bleed is now apart of me. It's apart of who and what I am.
There is no escaping and it simply just has to fully 100% be accepted. It's the only way to deal with it.
Very wise words indeed. If you are able to accept things as they currently are - not in as resigned/negative way, but in a sort of acknowledging that this is what's happening at the moment way then this will really help.
I have extreme mood swings (Bipolar) and have found the only way I can ride the waves of them is to accept them and know they will change, they are not permanent states of mind. Sometimes I try and fight against them and push them away, but it only makes me more anxious. I am also very good at wondering what has made me get into the current mood and thrash this over and over again in my mind. I think 'I'll just think about it one more time and then I'll have the answer' - but that also just makes it worse. I think the most helpful thing for unpredictable moods is to just think ' well it's here now and it will go again'.
Some say take it one day at a time but, in a Buddhist sort of way, one moment at a time is better IMHO. Whilst not being a Buddhist as such I have been reading more of their approach to life following doing mindfulness stuff.
Keep on keeping on Dave5
