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Dave 21 and a thanks to the NHS staff

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  • Keep going @Dave2l ... impressed with your post.
  • Yep - fascinating post two litres. Keep going mate.
  • Best wishes 2 litres. You're sounding good to me.
  • Dave, will pop down when Dad's back from Hols.
  • 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

  • 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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  • 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.

    Thanks
  • WSSWSS
    edited October 2018
    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.
  • Very best wishes to you both.

  • 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?
  • 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.

    If I don't have the operation, it means I will be at risk every year for the rest of my life....

    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.



  • 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.

    Thanks that was insightful and nicely put.

    Life is oh so strange really isn't it.

    What are we?

    Why are we here?
  • 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.
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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.
  • 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.
  • 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.
  • I have just caught up with this thread. There is nothing I can say but to wish you @Dave2l and @3blokes all the very very best. Sometimes words just don't seem adequate. You are dealing with one of life's real challenges. Stay positive if you can. :-)
  • Just caught up with this myself you are in my thoughts @Dave2l and @3blokes whatever path you take there is no wrong choice...I wish you all the best just keep on keeping on though and thanks for keeping the addicks family informed
  • edited October 2018
    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.
  • 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.

  • 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
  • @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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