Please come back to eHealth....... I'm a survivor and I'd love to talk to you!

I am a 1 year and 1 week survivor of a SAH (at age 47). I was miss diagnosed by one ER and then sent home by another ER 2 days later (knowing I had a SAH). 7 days later I landed in an ICU after suffering from vasospasms. One Neuro doc diagnosed me with vasculitis another with Call Flemming Syndrome. My new primary doc doesn't know what to think.

I don't have any outward physical disabilities, but my legs just don't work the same as they did prior to the attack. I suffer from extreme fatigue, confusion and memory problems when I'm tired. I am able to work and take care of my home, bike a few times a week and rollerblade too, but I can no longer run.

I long to be back to normal but, I think this will be my normal from here on in. Oh well, sure beats the alternative.

I hope your family member is doing well.

Feb 3 1999........9 year survivor! The fatigue, memory problems and confusion are a nightmare. I know people get so mad at me having to repeat things or tell me over nad over again, because I simply forgot. I can ride stationery bike, but hte treadmill is a no no.....throws me off! Did you have crainiotomy and have titanium clip? I can not recall passing out at the wheel of my car, running through two fences and crashing into a tree. I do not remember the accident, I had blacked out because the blood had leaked into my head. I had to relearn to walk, my husband said I was like a 4 year old for about 2 months. Normal?............I was NOT normal before this and I sure don't want to be normal now! Life is precious.......not a minute to be wasted or taken for granted! I can't very well go back into a lab under a fume hood to mix chemicals......cauee I can't remember! I love my life......forgetfulness and all! Oh,I still have headaches......you?

Forgive my delay in responding Fairy*Godmother, I've been attending meetings out of town.
I was fortunate in that I did not black out when the first attack happened. I was in the middle of a presentation when it hit and I thought I was having a stroke, but I did'nt have any physical signs of one. I drove myself home (1.5 hr commute) and suffered a second attack. My husband rushed me to the ER where my bp was 210/100. They treated me with pain meds, did a spinal and CT, both were clear. 2 days later during a follow-up visit to my primary Boom, I got hit again. This ER detected the bleed, but sent me home to recover. 7 days later after having an angiogram I ended up in the ICU.

My treatment was high dose prednisone for 6 months (instant 30lbs) along with a low dose of Norvasc, blood pressure medicine.
I still suffer headaches when I'm stressed and tired. I also have two aneurysms (did not cause the bleed) that they are watching with an MRA every year. If they get to be 6mm they will coil them, but for now they are just sitting out there. Some days I just do'nt want to get out of bed and others I can get up and start the day early enough.

My memory is terrible. I really noticed it this evening when I wanted to tell my husband something, but could not for the life of me remember what on earth I needed to tell him. It's like poof the though is gone and just can not retrieve it. I rely on my Franklin Planner to keep me organized and on track.

Well, it's almost 9pm and I am struggling to keep my eyes open, so I best be going. Have a great evening and hope to hear again from you.

I had SAH 3 years ago, and it was coiled successfully. Recently, my MRA showed "a small opening." I don't know just what that means. My doc wants to see me again in 6 months for another MRA. I just wish I had been alert enough to ask questions. NOW, I have a lot of questions. Has anyone been told later that they had a "small opening?"
My short term memory is bad, but I don't suffer from headaches. I tire easily also.

Hi Lousie! Welcome to eHealth. As stated, I have "state of the art TITANIUM clips" up there holding it all together!I love saying that! Always good to meet other survivors. My grandmother had aneurysm exact same location as mine, but hers burst before we could get her to the hospital and she died. That was in 1993. As for your question "a small opening"....if this were me, I'd find another neuro surgeon and get another opinion. There is no way I could go day in day out as you are having to do....not knowing what "a small opening lets keep an eye on)...not in this lifetime...This is your head we are talking about. A lot could happen in 6 months.....a lot could happen in one month....this is not a quessing game. Please keep us posted! FGM

hello !

- i had a grade IV brain hemorrahage around 18 months ago.
recently i have been trying to find a forum - to read about other peoples experiences.
its wonderful to be alive - its this simple thought that keeps me from loosing my mind complelty =)
i pray anyone who has to face this all the love in the world - and also one hell of a speedy recovery.
i will bookmark this site in case there are any replies - to guide me to a forum - it would be just remarkable to finally talk to other people to see how they cope/get through daily life.
the sad thing is only 4-6% survive this kind of accident - so i guess its expected that not many of us left to swap helpful advice =/
God bless !

james.

my son had a hemorhage in his left frontal lobe 15 months ago he was at a party
And complained of a headache the next morning his friends found him passed out
On the floor. They rushed him to the er and a cat scan showed a large bleed. They
life flighted him to tulane and did emergency surg. They said the hemhorage was
Very large 6 cm. And didn't know what to expect when he woke up. He was in a coma
For days. This was the hardest thing we've ever gone through. We have 2 other teens
Who are wonderful, but this was the one who excelled at school his grades were at the
Top. School was so easy for him, the other two struggled. I have the full.story and pics
On carepage.com anyway he finally woke up after about a week and didn't know our names
Didn't know or remember where he was even when asked a few seconds after hearing the
Answer. But thank God a coulpe weeks later his memory and everything else almost back.
He did strugle like with finding the right words to things he wanted to say for a few months,
The graduated with his class 4weeks later by doing home bound the teachers were great.
Now 15 months later he still has no perifial vision, seems his personality is a little different
Dosent seem to have any motivation to do anything except hang out with friends. He's just turned 19 took his act last week but is depressed because he says he did terrible. I told him
Not to worry that he can take it again if he chooses. I'm so happy to have him he's a miracle
And is doing great.

oh I forgot the name of his page on care page is justinsfight

=)

i am so happy you have him back - and even happier he is able to hug you freely =)

i used to have limits on what kind of life i thought was acceptable and what was not.

Unless you are being tortured on a daily basis - i would say anything else is wonderful.... and truly a blessing.
Im ashamed to say that previously in my life i held the view that if i was wheelchair bound with limbs missing - i would rather not be alive.
I am rather more proud - and a little more wiser to know that as long as i can breathe and simply see - or hear... the art of communication and the love between people has shown me that it is the basic humble simple things in life that bring so much joy and happiness - that enrichess my daily life !

i guess what i am trying to say is take one step at a time - take things very very slowly - and be happy - very happy at what you have, every minute, every day,
and love each other - truly.
God bless =)

Hi, I had a subarachnoid Hemorrhage in 2007. I was at work when i was knocked to my knees from the intense pain. I was in ICU for several days and stayed in the hospital for 13 more. They could not coil because it had already bled out. My wife says the Vasospasms were the worst. I remember bits. I tried going back to work but recently gave in to the headaches. I dont sleep very much and take meds for depression. I thank the Lord above for each day I have with my family.