Hi there

My user name on the old forum was Lyn (I needed to add another 'n' so I could register here). Not sure yet who is around on this forum, but I am looking forward to talking to you.

Cheers
Lyn

hi lynn

welcome to bt2.

my mother's side of the family has a history of aneurysms. 3 of my aunt's lives have been dramaticly changed due to this.

one got staph infection from the surgeon and has a piece of her skull missing. another was given the wrong med after surgery and it burned the veins in her hand, which she had most amputated because of.

it's not just the aneurysm that does damage. the person can't always communicate when they are in pain or know there is a problem. i'm really glad to see this forum here.

Hi,

My mother's family also has a history of aneurisms. I have an aunt and grandfather who died of them. We also have history of hypertension - bad combination.

When I had my rupture in Jan. 2006, I was fortunate to have survived. It took me six months of physical, cognitive therapy but I made it back with little deficits. Short term memory is not very good, but I work on it. Since my rupture, some family members have been tested. Fortunately, no one has annies. Unfortunately, they have 2 more to monitor. But glad we found them, before they found me..again.

Brain injury is a long and difficult injury. But I am glad I also found this site. My brother found it while I was in the hospital.

I hope more people from the old BT will post here. They're like family.

Hi everyone,

My husband had a ruptured cerebral aneurysm in October of 1984. He is now a non-verbal total care quad. He does understand but can only communicate with grunts, groans, and eye blinks. He has a feeding tube and we
use a wheelchair. He also had to deal with kidney cancer and the loss of that kidney in 1993. He was 37 years old when he had the aneurysm and I have been caring for him at home since that time. I didn't post on this forum at BT1 because I wasn't sure what I could contribute. But, who knows, maybe I can be of some help here.

What can you contribute Trekker?

The answer to that is heaps! It is often so much harder for loved ones coping with this monster than it is for the patient. I am sure that your care, wisdom, and patience will be really valued by lots of people on here - another side of it so to speak.

In return, I am sure that we can be here for you when you need some support. It sounds like you have been through more than your fair share of misery with all this.

It is really nice to meet you - looking forward to getting to know you better.

Cheers

Lyn

LOL Patience! The only reason I appear to have patience is I'm too gosh darn tired to react with any speed. I'm actually very impatient with "the system", drives me nuts. I'm so tired of dealing with uncaring beaurocrats, poorly trained techs, and companies that will only deal with us long enough to get paid and then we are invisible to them.

Wisdom? Most days I just simply put on foot in front of the other. The brain is barely functioning on those days

Care. Ok I'll give you that one. Although part of me just wants to prove to "the powers that be" that if you do what is [U]right[U] it is actually cheaper to care for a disabled person. Hubby is stable because for the last 22 years I have worked hard and trained the people who work for us properly. No one expected DH to live this long and be in such good physical shape...e.g. in those 22 years the only skin breakdowns he has had were caused by the "care" he got while in the hospital. If he's in there for any length of time he comes home with a breakdown...and I stay with him 24/7 when he's there so I can direct his daily care....actually have a hard time getting aides to spend anymore than 15 minutes in his room. They fight me on his meds, his care, his ability to understand, what his needs are and I always have to fight for a special mattress...they always want to wait until he gets worse because he's not being supported properly or until he breaks down. They'd rather have the already overburdened nurses come in to turn him every two hours than to get the right mattress....stupid, wasteful, and most of all hard on DH.

Sorry this turned into a rant but I'm having trouble getting tires for DH's wheelchair..why? because we kept the chair longer than they like and no ones knows what size tires we need...and the wheelchair company refuses to co-operate. How dare we not buy a new chair that we don't need! LOL I should start a thread...what's the stupidest thing that you've had to deal with in the system?

Hi I'm firefly I had an ruptured Annie last June of 05. I have been I have been in recovery since and still have a long way to go. I am so lucky not to have any limb loss, but my memory, coordination, speech & communications are still bad!! Light sensitive, severe insomnia, headackes...
I feel that my husband has been essential to my recovery!! Just the love is enough to get me through some days!! I am so sorry about your hubby!! I know how hard your life must be, but God bless you for staying by his side!! That is the most important thing you can do is just reasure his love!! My husband has been so awesome and still has to take care of shopping...
Your doing more than you can imagine hun!! The love and care you have provided for him is worth more than you can ever know! God bless you and your husband!! We are herer for you to vent to ro whateve you want to say!! My prayers will be with you!! Love Tricia!!
Here is a poem I wrote for all the caretakers!! We know it is just as hard on you too!!!

We are so sorry

We are so sorry, to all of our family and friends
We know the "Annie" has altered your life too
See the distress & fear while you try to pretend
We all wish there was something we could do

We are so sorry to have placed this in your lap
Know it's a magnitude for someone to take on
Wish we could complete, these enormous gaps
We're so lucky to have all of you to lean upon

We are so sorry though know it is not our fault
Know that this is physical, but feels so mental
We do not mean to be malicious, or even insult
Sorry but our brain can be a bit uncontrollable

We are so sorry, know it is just as hard on you
Know we have a long road ahead so hold fast
We know lacking you we could not get through
Together we know this will be a thing of past

We are so sorry, our recovery is of such length
Know a number of us are extremely depending
Recognize your support, devotion & strength
Vital to our recovery by the love your sending

We are so sorry, but so grateful to have you all
Know that life can teach us a lot about kinship
We couldn't get through this without you to call
Your patience, love, attention, care, friendship

FireflyR7 4/3/06

Thank you to all the spouses, family & friends
Who have helped take care of an "Annie" Survivor! 8)

Wow firefly! Thanks for taking the time to write a poem for caregivers even with all you have to deal with.

Where was your "annie"? Hubby's was in right temporal lobe but of course the bleed damaged other areas of the brain as well. Hubby is very light sensitive too. This is the first time I have heard another survivor mention the light problem. Are you still going to therapy? Your DH sounds wonderful. Tell him I said Hi. Hubby didn't co-operate with his therapists much..long story. We still have to "sneak" in his physical therapy. If we tell him we are going to do some he starts saying ow even before we start LOL. Makes people feel so bad they don't want to do the therapy. But when we sneak it in he doesn't complain at all.

Thanks for your kind words! My ruptured "Annie" is on the left side, next to my optical artery and communicating arteries. Close to my temple area I guess?? I don't know how I got so lucky not to have worst deficits!! I threw a clot durring the first surg. & died on the table and the whole left side of my brain turned grey temporarily until the clot disolved. My neuro is amazed that I survived the rupture, then that. My memory and insomnia is the worst!! I have a lot of cognitive, coordination prob., light sensitivity, headaches... But I have full use of everything!! My long term memory is perfect thank God! I have been doing my own rehab due to lack of funds to go to a regular facility. I am getting there slowly but surely! It takes a long time for the brain to heal. I have heard of people gaining full use or recovery after many years? I will keep your hubby in my prayers!! I will write more soon! God bless you for all that you have done for him!!! Take care, Love Tricia