just thought id say hi to you all as im a newbie to this community.I am surviver of one rupture (sah) back in 2004,they discovered 5 in total,2 crainiotomies later and 4 clippings im still waiting for the final op.Over time i hope to help those in need of friendship and understanding.Not much was known or information was on the internet about it back in 04 i felt so alone.Hope to make new friends etc.
xxoo
tweeter
Hi and welcome,
Awarness of aneurysms is still very low and we hope with all of us here we can help others to understand that they are not alone!!!
Kimberley
WELCOME
I am also a newbie here, just had my coils on Feb. 27th and am trying to find my way through all of this. Left side of my face went numb on Monday, ended up back in hospital with more tests! got to go home and was told this is my new normal for migraines, so still can't find a lot of information specific to each different procedure anywhere! or, maybe I am still confused! so you got a friend here!
Welcome to this very select group. I know what you mean about lack of info. Back in 1991 there really was nothing. The internet was so new and we couldn’t even find a booklet!!! During my early years of recovery I felt so isolated. But being part of the founding of BAF (a charter member) has been a great experience. My words for you tonight are in regards to recovery…slow and steady my friend, slow and steady. Let us know how you are doing. warmly,Gail
slow and steady? man I wish I had patience, but then again I don’t have a choice so if I over exert, I pay with severe pain all night. I just don’t know what my limits are yet and I don’t know how to find them, I don’t know what is going to be normal for me and what is going to change. That is probably what you hear all the time, it is so very confusing. The guilt of sitting around is making me crazy, even if I am in pain, I don’t feel I have the right to just do nothing! So confusing!
i think the feeling of lonliness mostly comes from hearing the word aneurysm.Certain conditions are commonly discussed and known about but aneurysms?I was like wtf man? where did that word come from .I had never heard of it before.But we learn to live with it and plod along with life.
Thanks for the welcome kimberly
xxoo
tweeter
thanks lisa
xxoo
tweeter
oh beverly its such early days for you,so soon,you would still be getting over the shock of it all im not a coily im a clippy,as you will discover i have strange terms for things when it comes to annies.6 yrs on from my last crannie and i still get headaches all the time,do you know where you were coiled?what part of the brain?.Did you go through a rupture or was it found prior?
Ok
coily=someone who has been coiled
clippy = someone who has been clipped
annie = aneurysm
crannie=crainiotomy.
:)
Never be afraid to ask me any questions or tell me anything you are feeling even if you think its stupid etc.I am not a doctor but i am a survivor of 4 clippings,coma,rupture etc,im here for you
xxoo
please take care
tweeter
we are a select group arent we when we think about it,ive never really thought of survival in that way ,ive always just thought lucky etc lol.Its only the past year or so ive found that groups and information has become more freely available.I am a moderator of the aneurysmsupport forum and one thing i have found is that we all are alike in so many ways,knowing others are out there and that our emotions are normal really helps.Im 7 yrs post rupture and 6 yrs post 2nd clipping, im on watch and wait for the final clipping as its difficult to tackle and the risks of rupture do not outweigh stroke during surgery as yet.The road is long but i decided a while ago that if my only purpose in life was to put a smile on the face of just one person a day then life is worthwhile.Thankyou for your kind welcoming Gail and i hope over time i can be there for others who are at early stages of recovery.
xxoo
tweeter
I am a coily, it had ruptured, blood in brain and spinal fluid would no longer flow, went tru intensive spinal tap over 2 hours prior to surgery, and then had to hold on while being transfered to another hospital 2 hours away. So after getting to the hospital 2 days after rupture, it was another day before I got surgery so by then I was only minutes away from the last of me! The recovery headaches are herendous, nothing seems to stop them! I hold on to the thought of those less fortunate than me that have less to live with. And this site is a blessing! Man, you have been tru a lo, how do they find the new ones? is that with follow up or did you know they were there from the beginning? that is very scary! I have follow up apointment on 4-15 then 5 months till next angiogram. Guess we just take it one annie at a time!
bev ,I never knew about the little time bombs ticking away inside.They sat there so quietly and silently until one went "BOOM",all 5 were found after the bleed on a scan,but last scan revealed more could be forming.Im hoping they will just take years to develop and by that time il be old and grey,sitting on a rocking chair on my front verandah lol all gummy with my hair in a bun.
Your world has been changed in an instant darl,you are recovering from a rupture and an operation,the worst thing we can do as survivors ( and i really hate that term),is stress,we cant help it we feel as if we have been hit by a Mac Truck and woke up days or weeks later with life never to be the same again.Please keep up the positive attitude because that will get you through the years it can take to get over the shock,change in lifestyle,the loss of who you once were etc.I think i have pounded you with enough to read and think about at the moment.Its way to early for you in recovery to be thinking "why me?" if thats happening to you,My story is long i died and was bought back and then coma etc i did write 2 parts of it on another forum and one day i will write it here.
Remember you still are a beautiful person,what you are going through is normal,do not stress over the slightest pain etc as i found myself doing,your blood pressure must stay low.
take care possum chops
xxoo
tweeter
some of you headaches may be swelling due to the operation also.
(i am not a medical professional,just experienced lol)
you can write me a book anyday! I enjoy reading of others experiences. So I also died, saw my son, sister and Mom who had all passed, it was thrilling! I was brought back also. No coma, no physical handicaps as of now, just the headaches, pain down back of legs that has gotten much better, and confusion, anxiety, and fear of recurrance or new annie, but I well get through with help from my family and friends. This changing world is somewhat of an adventure, because it is new, I am taking it slow as I can, not sure where to expect things to be different. Noise levels are more tollerable as of today, yup you were right, day by day! callin it a night, gotta get some rest, tomorrow is a new day! thanks for answering me so promptly! It;s great to meet you!
Bev
Welcome to Tweeter and to Beverly...
thankyou pat,its nice to feel welcomed
take care
xxoo
tweeter
Welcome … from one Survivor to Another…! Colleen
thankyou colleen ,im feeling rather loved with all the welcomes
xxoo
stay safe and well
tweeter
Hi! Your story sounds like I'm reading my own. Wow. Prayer is so helpful, I do it just to keep my sanity day to day. My first craniotomy was in 2004 also, and I had two endovascular surgeries in 2005. I have a clip and coils, and also was blind in my left eye for a year and a half, so its been to say the least, a rough road, but I am maintaining and trying to get through each day. Its a struggle, this support group is therapy for the heart and soul and you know now that you are not alone in how and what you are feeling. I am here definitely anytime. Take care.
thanks darlin,i put another story on my bloggy thing about the first few weeks,lol , i had a creative writing streak in me.If you dont mind have a read and maybe comment ,that way early survivors may feel more at peace when they read it.
take care possum chops
xxoo
tweeter
Oh and thankyou for the welcome ( how rude of me i almost forgot ) :)
Well, hello. I've 5 of the beasts too. My first operation was 2007; the last 2009. Not much advice or support out there in internet land or anywhere else then as well. That feeling of being so alone hit me like the old cliche--tone of bricks. Coilings and a craniotomy later I'm through with operations and on to recovery and life, tough journey though.
Your mission is the same as mine. I want folks to have support. I want support-givers and friends to understand recovery is a years long process. I want to be available when self-confidence is lagging, when someone needs a hug, even if it's a cyber hug.
Good luck and a speedy recovery after your next surgery.