Nicole, thank you for putting it into perspective for me that I am lucky to even have the option of surgery before it ever bleeds! And FYI: I am embracing the short hair style and donating 10 inches to locks of love next week
Nicole L. Hulbert said:
I was born with my AVM and never knew it existed until it ruptured in 2009. I wish I would have maybe had the surgery option before the rupture. Cause let me assure you the crainiotomy was nothing compared to the bleed. Thanks to great rehaqb I am walking,talking,pain free; just a really bad hair style which happens when you get your head shaved in the E.R.I suggest you embrace the idea of a short hair style!
Nicole, you are exactly right. I also had my AVM for 39 years, had run hundred of miles, 2 half marathons, gave birth to 2 children and nothingā¦ then on an ordinary Thursday morning I had a hemorrhageā¦ the bleed was so much worse, the pain, the deficiencies, not being able to read, photosensitivity, etcā¦ the craniotomy was ācakeā and the recovery was so much easier. Iām embracing my shorter hair styleā¦ I always had longer hair and now I love it short!!! It took the craniotomy to help me find a new hair style that I love
Hi Caity - I have my Gamma Knife Surgery scheduled for next week (about the same time as your brain surgery) so I will be thinking of you!! I'm 30 and this is the first major surgery/treatment I'll be going through as well - you gotta think positive! These treatments have the best chance of going well in young people, so we've got age as an advantage!!!
Best of luck and know there's plenty of us out here who will be praying for you!!!
Well I took the day before my surgery, the 15th, off of work, so this means I will have plenty of free time to pray and send some positive energy your way on the day of your gamma knife surgery! Even though I might not be able to respond for a few weeks, please email me and let me know how it goes!
Carrie A. Neff said:
Hi Caity - I have my Gamma Knife Surgery scheduled for next week (about the same time as your brain surgery) so I will be thinking of you!! I'm 30 and this is the first major surgery/treatment I'll be going through as well - you gotta think positive! These treatments have the best chance of going well in young people, so we've got age as an advantage!!!
Best of luck and know there's plenty of us out here who will be praying for you!!!
Thanks for sharing your stories and your honesty about being scared. I too am due for avm brain surgery in just over a week and am a bit freaked out by the prospect, having never had an operation before and I am older than both of you.
I'm such a baby that I cried when they rolled me into the MRI tunnel a few weeks ago!!!! In my defence I do suffer from claustrophobia. Thankfully when they tried again, a couple of days later, they had given me a couple of pills and I was just fine and wondered what all the fuss had been about! The joys of modern medicine.
Anyway, just want to wish you both the very best and to let you know that I will be thinking of you and sending out positive energy all the way from Melbourne.
Please let me/us know how you go when you are up to it post procedure. I will try and do likewise. And yes Carrie is right you are both young and have a lot of life to be lived ahead of you. So it won't be long before you can put this episode behind you and get on with living your lives. Big hug to each of you. Anna xx
Treat yourself in the week before. You will be lying down alot after, so ask a friend to come in and paint your nails! My brain avm bled when I was in my teens and I had a craniotomy. The nurses were incredibly kind, I was very calm throughout. (As it happened when I was so young, I was more pre-occupied with boys than whatever was going on in my brain!) It will be a time when you will be looked after by those who love you. When I had my op, my neighbour also went into hospital to have an op on her finger. I was out before her! I did not go into ICU and was back on the ward quickly, then home in my own bed after stopping off for fish and chips! When your hair grows back it will be a bit itchy, but that's no big deal and there are lots of pretty scarves and hats to wear! Or just go au naturel!
e-mail me if you wish & I will try to get back to you.
flower
x
Anna said:
Hi there Caity and Carrie
Thanks for sharing your stories and your honesty about being scared. I too am due for avm brain surgery in just over a week and am a bit freaked out by the prospect, having never had an operation before and I am older than both of you.
I'm such a baby that I cried when they rolled me into the MRI tunnel a few weeks ago!!!! In my defence I do suffer from claustrophobia. Thankfully when they tried again, a couple of days later, they had given me a couple of pills and I was just fine and wondered what all the fuss had been about! The joys of modern medicine.
Anyway, just want to wish you both the very best and to let you know that I will be thinking of you and sending out positive energy all the way from Melbourne.
Please let me/us know how you go when you are up to it post procedure. I will try and do likewise. And yes Carrie is right you are both young and have a lot of life to be lived ahead of you. So it won't be long before you can put this episode behind you and get on with living your lives. Big hug to each of you. Anna xx
I actually did not have to shave my head before the surgery and i have long hair. I had a frontal lobe crani. So i actuall look like i have a head band and it is very easy to cover up. You only see a little spot on the top of my head that i canāt cover. I can tell you the first 24 for hours was the hardest for pain but by the 2nd day i was taking 1 percocet in the morning and 1 at night other than that there really wasnāt much pain. i was in ICU for 3 days and moved to a regular floor the 3rd night and released the next day. I guess i should tell you I did not have a bleed or anything before the surgery. So everything was a good experience as it could be i guess for finding out I had an AVM That involved 2 major arteries one being the carotid artery. They only issues i have now is low blood pressures so i am cold all the time even in 90 degree weather i still need a jacket. So i get teased alot. and if i sit to long my hands and feet turn purple. which my kids think is cool. I guess i really canāt so much about the surgery its self nothing really happened it was a good experience a few issues with a nurse and equiptment placement that caused me to hit my head on so i would suggest not sitting up before looking around first above the bed ( a little lesson I learned ! that really hurt !! which I can laugh about now LOL) I pretty much was up moving around slowly the next day visting with family and friends but you get tired very fast for the first month so just take it easy and listent to your body and you will be up and around and back to your self in no time. I actually went back to work 1 mo. after my surgery full time. I am a nurse in a nursing home. I hope this helped. I will be thinking of you and looking forward to hearing from you after your surgery! tonna
I've had my operation more than five years ago. My first operation was an emergency, so I did not have to wait. I had a second one a couple months later and it was not too bad. I manage to wake up a couple of hours after the sugery and start talking with the nurses. After a week in hospital I was allowed to go home. Later I went back to professional life, and working as a manager now.
In these last few years I just kept praying to God. I will certainly pray for you, now and while you are hospital. Cheer up!
Hay, I am in hospital at the moment day 13 after crani and it is really not that bad. it is hard work learning and waiting for things to come back to what they were and getting speach back ect. I have been lucky right side weekness although bad to start not bad now only 13 days latter. looking at maybe a week rehab just to work on balance etc. My family and I get a good laugh out of some of my words and then I just repeat until i get it right.
I was very scared leading up to operation, it is normal in any sort of op, but you will be fine,you will be fine, you will be fine!!!
Stop reading the bad stories, that was my mystake, we all have negative come out now and then but try to vent here and get rid of it so the positive stays with you
caity; I have children and while going through my embos I remind them nothing back in life only chances for growth and learning.
Of course you aer scared, anxious etc. but keep positive...Think of it as it will be over...maybe a few days you will be out of it but you will be cured and can put this behind you and I am sure you will have inspired many people. We on this site truly don't know what our avms have taught otehrs. We don't want sympathy but its great to go to a place wehre all "get it".
I will keep you in prayer and all will be well...Think posititve thoughts. I am okay now back to work and while maybe I am not 100% (i get tired etc), I am a nurse and back tow ork and my avm was a blessing as my priorities are straight. Don't sweat the small stuff and things you cannnot control roll with it! All will be ok.
I just did a 20 mile hike yesterday that I couldn't think of doing two years ago being so sick!!!!!!!!!!!!!!!!!!! Fel so so good!
Mare, that is AWESOME about the hike. I can't wait to get my 'walking papers' from the doctor and get back to my active life....
~Sue
Mare said:
caity; I have children and while going through my embos I remind them nothing back in life only chances for growth and learning.
Of course you aer scared, anxious etc. but keep positive...Think of it as it will be over...maybe a few days you will be out of it but you will be cured and can put this behind you and I am sure you will have inspired many people. We on this site truly don't know what our avms have taught otehrs. We don't want sympathy but its great to go to a place wehre all "get it".
I will keep you in prayer and all will be well...Think posititve thoughts. I am okay now back to work and while maybe I am not 100% (i get tired etc), I am a nurse and back tow ork and my avm was a blessing as my priorities are straight. Don't sweat the small stuff and things you cannnot control roll with it! All will be ok.
I just did a 20 mile hike yesterday that I couldn't think of doing two years ago being so sick!!!!!!!!!!!!!!!!!!! Fel so so good!
I was lucky. I had no idea I had an AVM. I had a bleed, was unconscious and woke up 2 days later with my head cut open...so no anxiety leading up to surgery. Not gonna completely sugarcoat it. No brain surgery is good. But I got through it. No negative effects. I walked out of the hospital 14 days later. I was up and walking around after a few days. You will probably be even better than me because your surgery is planned. I had a major bleed and almost died.
Just relax. The doctors know what they are doing. Morphine is fabulous. You will be so high, you will have no idea whats going on. :)
I was lucky. I had no idea I had an AVM. I had a bleed, was unconscious and woke up 2 days later with my head cut open...so no anxiety leading up to surgery. Not gonna completely sugarcoat it. No brain surgery is good. But I got through it. No negative effects. I walked out of the hospital 14 days later. I was up and walking around after a few days. You will probably be even better than me because your surgery is planned. I had a major bleed and almost died.
Just relax. The doctors know what they are doing. Morphine is fabulous. You will be so high, you will have no idea whats going on. :)
The sooner you get the surgery done, the sooner you will be back to normal. Good luck! You will be in my prayers!
What not more positive than being alive to tell the tale? Yes of course sometimes there are the risks associated with these things, but positively its better to be able to come on here and post things about surgery rather than not.
You will come out of this ok. Positive thoughts in your own strength are a positive thing,, look how many people are here telling their story even if it does seem negative - they are alive!
Hi Caity.
Iām sorry I didnāt see your post before your surgery. I hope is well with you. I hope to hear something soon on your recovery.
I was 20 when I had a right temporal lobe avm removed and 26 years later Iām ok. Iāve worked in some really good jobs including at the I.R.S. and other Government jobs. I suffered a stroke during the surgery but the weird thing is I didnt know about that until yesterday. My Mother just told me and I had no clue. I have a weakness on the left side from it and lost part of my vision to the left but I drove for years. I turned my license in 11 years ago bc I was afraid to drive anymore. I was the miracle kid back than and Iām sure you will be the miracle kid now!
I will await your reply. Get well soon
Jill
hi Caity. Was just trying to forget my headache by reading stuff when i ran across you blog. How are you? Hope everything went just great for you. my prayers to you. I am still debating surgery or not and would welcome your insight now that you have been there done that. Thank you for a reply. Carla
I had an embolization on Friday the 13thā¦ !! and it was the luckiest day of my lifeā¦ mine was found before a bleed 12 years ago and good sinceā¦ getting test to check things out again to see if new feeders as I have some nosebleeds and headaches but think they may be something elseā¦ I only had a little eye vision lossā¦ I almost changed my date due to the superstitions of friday the 13thā¦ but now consider it my luckiest day as I said. Sure was scary tho I was 39 at the timeā¦ best to you
Hello. I too have recently been diagnosedā¦right frontal lobe avm. I am waiting for my slew of procedures until my Fall semester is finished. I will have 6 weeks off of school after. That should be good for my recovery, I hope. I am striving for my degree in education, with or without my avm.I am hoping this will help me stay focused on something other than my brain. I am optimistic about the procedures though. That means no risk for an anurysm. My experiences with my team of docs has been positive. Definitely I agree about the scary stories out there. I am trying to find myself in the beautiful things around me. An avm will do that for ya. There is so much around to marvel at. Its a great release for me. I also play alot of games with my husband . It does get tough to be upbeat at times. I am going to start counseling soon to help me through the adjustments. I also am focusing on healthy living. We shall seeā¦keep your chin up. Send me a message anytime you need to chat. I believe there is strength in numbers!
