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coug70_99:
I just found this web site and can't thank you all enough. I am the main caregiver for my husband of 26 years. He spent 9 years looking for a diagnosis and has now been 4 years post op. Sadly I think the post op years may have been worse then the undiagnosed time. For years he was able to believe that one day he would be okay. Even in the early days after the surgery he was optimistic but the past 2-3 years have been pure hell. He has fallen into a major depression. Medications do not help. His neurologists have released him from care. There is nothing more they can do. Reading your posts today I have learned that loss of memory can be associated with AN. His doctors SWORE the two where not related. He has short term memory loss. Maybe knowing that it is related to the AN will help, maybe it is too late to matter. We say mean hurtful things to one another, he is the lucky one he doesn't remember them by the next day. I never forget them. One of his docs told him after the surgery he might be able to someday drive his motorcycle again. He loved riding his bike. He still cannot walk in a straight line. He can't drive a car, he can't find his way back home. I know I am just babbling here. I don't even know what I want to say because there isn't enough time or space to say all the things I have held in for 13 years. I would like to meet other caregivers who can tell me how you do it. How do you go on day after day? I am at a point in my life where I could just walk out the door and never look back. After 26 years of marriage how can I be so selfish?

sgerrard:
I hope that Raydean sees your post, and can tell you about her experience. You can see some of it in the topic called "Need Advice as a Caregiver." It is important to take care of yourself in this kind of situation, and you certainly should not feel selfish for considering your own health and well being.

I don't know what actually happened with your husband, but if he has persistent short term memory loss, it seems likely to me that he has experienced some kind of damage to the brain. Whether the AN caused that, or the surgery did, or something else caused both the AN and the memory loss, probably can't be determined.

I do think you should get a copy of the book The Brain that Changes Itself, by Norman Doidge, MD. He describes the tendency of traditional neurologists to give up on rehabilitation after 2 or 3 months, as yours apparently have done. There are some doctors, though, that are trying new things, and having successes that come years after the initial trauma, and involve extensive retraining of the brain. People learn to walk again, and recover cognitive functions, even years later. It may provide inspiration, and it might provide some leads on places to contact. Even just getting a home training program might help restore some abilities.

Whether you decide that you want to stay with him and do what you can, or that your life together is over and it is time to move on, you will find support here on the forum. There are also some good resources listed on the ANA main website, specific to caregivers: http://www.anausa.org/caregiver_resources.html.

Wishing you all the best,

Steve

Jim Scott:
coug70_99:

I'm glad you found this website and these forums.  I wish I could offer you some words that would help you resolve this near-tragic situation with your husband.  Unfortunately, I doubt anyone can.  It has been going on a long time and won't be remedied quickly, if at all.  Your patience is commendable, considering the situation and any feelings of guilt you're harboring are totally unnecessary.  Your life has been turned upside down and nothing is the same anymore, especially the man you married and want so much to help...but cannot.  That has to be torture. 

I have no idea whether your husband's memory loss is associated with his acoustic neuroma, his surgery or something else entirely. I would suggest you take him to a doctor for evaluation and quite possibly, an MRI to see if his brain shows any signs of damage or even signs of degeneration.  You didn't mention his age or the specifics of his AN (size) and surgery type, etc. which might be informative.

I would try to ignore his negative outbursts as much as possible and know that this is not 'him' talking.  Try to get counseling for yourself as you certainly are in need of some solace and the chance to talk about this with someone who may be able to offer coping suggestions.  Frankly, although it's easy for me to say, I know, I would do everything possible to solve this situation before giving up.  If it remains unsolvable, you may have to separate but you would want to do so knowing that you tried everything possible, first.

As a side note: my wife has told me that early in my recuperation I was quite 'touchy' and seemed to resent her gentle efforts to help me do anything.  She worried that was going to be my permanent attitude and life was going to get very difficult.  Fortunately, I 'came out of it' (her words) and my usual charming disposition re-surfaced.  :)  Actually, I was just my normal, impatient-but-not-hostile self.  I've since apolgized to her, she dismissed it as just a stage in my recovery (now complete) and we've moved on.  I hope and pray that some day you and your husband will have a similar story to tell.  Meanwhile, my prayers are with you.

Jim

Debbi:
I would second Steve's recommendation on The Brain That Changes Itself.  It is an excllent book that was recommended to me by a friend who has incurable brain cancer.  It may help you cope.  It sounds like it has been a very, very difficult time for you.

Debbi

lacey7:
I can relate "somewhat", for I was a caretaker for my son from 1984-1988.  It wasn't from AN, but it was a "brain damage" he had.  I had to do everything for him.
He couldn't move a muscle, or eat, or do anything.  His age was 12-16.  It was from a near-drowning accident.  The only reason I'm posting this, is b/c I understand everything you are going thru.  No time for yourself, or anything.  We had hope for him, but in 1988 he died from pneumonia.
If I were you, I would go to every and any doctor you can to get a correct diagnosis.  I took Scott all over the U.S. for help.  That way, I knew I did everything I could possibly do.  There has to be a reason for your husband's short term memory, and the fact he can't walk a straight line.  There has to be a doctor who can find out why.
Just do everything you can do.....if you can....b/c of insurance........and then make your big decision then.  At least you won't have guilt, thinking later "if I should have done this" or whatever.
My heart goes out to you.  I pray for God to give you the strength you need to get thru this.  You've already gone thru so much.
Please keep us informed of what happens, ok?
I care for you, and I want to pray for you.
Lacey

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