In exactly two weeks I will be getting brain surgery to get an AVM removed. At the age of 25, this will be my first surgery ever, so as you can imagine, I'm incredibly anxious about the experience, and the doctors haven't really provided much psychological comfort...
Now I'm sure like the rest of you, when I found out I had an AVM and needed brain surgery to treat it, I went straight to google, and quite frankly, the stories that come up are pretty scary and not comforting at all, and most people who post on the discussion boards are people dealing with pain/emotional distress post-surgery (I'm sure that will be me pretty soon), but rather than find comfort in this, the stories have only increased my fear about going under the knife, because I don't come across many positive stories.
I'm sure that in a months time I will need to utilize the discussion boards to talk about the pain and exhaustion I am feeling after surgery, but right now I need positive stories about brain surgery, so If anyone has had a POSITIVE experience with brain surgery, can you please comment about it so I can get pumped up for my surgery on June 16th?
Any help or words of encouragement you could provide would be greatly appreciated!
I think you're absolutely right, that the people who post their stories or who start discussion threads tend to be the group of people who had it the worst...I had the same experience as you when I was googling for info before my husband's surgery.
After his surgery, my husband was thinking more clearly--we hadn't noticed he was confused before until we saw how well he was doing afterward. Also, he started making puns for the first time ever. I have no idea how that happened, but he somehow discovered a new mental function after surgery.
I hope your surgery gives you something new and good!
JH, what a great response! I was smiling when I read the bit about your husband making puns, and how the surgery could possibly give me something new and good to look forward to in life. I think people always see surgery as something that ātakes awayā rather than something that āgives back,ā so thank you for helping me to look at it in a different light!
JH said:
Hi Caity,
I think you're absolutely right, that the people who post their stories or who start discussion threads tend to be the group of people who had it the worst...I had the same experience as you when I was googling for info before my husband's surgery.
After his surgery, my husband was thinking more clearly--we hadn't noticed he was confused before until we saw how well he was doing afterward. Also, he started making puns for the first time ever. I have no idea how that happened, but he somehow discovered a new mental function after surgery.
I hope your surgery gives you something new and good!
Caity, There is a Success Story group on the network. My prayer is that more people add their success story to that groupā¦It would be so helpful for people who need to hear about successful recovery after having an AVM surgery. There are many people who could helpā¦Wish you the best! In the meantime, Keep the Faith!
My husband had his craniotomy with avm resection from his right front lobe on 02/11/11. The surgery went well. While he was in the hospital he had a little bit of pain but was able to cut down on pain meds within a few days. He spent 7 days in the neurosurgical ICU. This was a little bit longer than expected but it was because they had some trouble keeping his blood pressure down and his oxygen levels up. He felt great and wanted out of bed but due to his blood pressure and oxygen they made him stay in bed. His biggest complaint was he was bored and did not have a window! He then stayed for 2 days in a regular room. On day 9 he went home feeling great. He still gets headaches daily but he had daily headaches before the surgery. Heās also tired quite a bit. But overall he is doing pretty well. We will say a prayer for you and send some positive energy your way. Hope that everything goes well for you!
Caity!!! I had my craniotomy on May 11th and I had a VERY POSITIVE experienceā¦ had the surgery on Wed late afternoon and was home on Saturday morning. Iām 39 and in great shape (was a runner and worked out daily before my AVM hemorhage). I had my bleed on March 24th and the surgery was āput offā so the brain could heal from the bleed. It is a safer and easier surgery if it is done on a āhealthyā brain. I realize not everyone is in that situation and may have surgery immediately, but it really isnāt bad. 2 weeks after surgery, Iām walking 3 miles a day, tooling around the neighborhood on my bike with the kidsā¦ life is getting back to normal. I was very lucky and had great care. LOVED my doctor. And every day after surgery it just gets easier, honestly. 1 week after the surgery, I had my cranial angiogram to make sure the AVM was gone (which it was), and that was actually worse than the craniotomy. Looking online for āgoodā stories is hard, people tend to put the worse stuff out thereā¦ I actually wrote up my memoirs about my experience, from bleed to post-op follow-up appointment. Iāve attached it hereā¦ please read it when you have time, I hope it helps you not be so scared. My sense of humor helped me get thru the scary times, the sad times and the good timesā¦ please email me directly if you have any questions (ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ). You will be in my thoughtsā¦ You are young and have your whole life ahead of youā¦ this is just a āspeed bump in your roadāā¦ you will get thru it and move onā¦ You are lucky, after the surgery you will be CURED (like me) and CURED is a wonderful thing. 430-thespeedbump.doc (1.66 MB)
yay! this story was perfect for me to hear Susan, because like yourself, I am an avid runner who also works out daily and cares a lot about health and proper nutrition, so this helped boost my confidence a bit, because now I am hopeful that my active lifestyle might lead to a fast recovery! Thank you for sharing your experience with me.
Susan Harris said:
Caity!!! I had my craniotomy on May 11th and I had a VERY POSITIVE experience... had the surgery on Wed late afternoon and was home on Saturday morning. I'm 39 and in great shape (was a runner and worked out daily before my AVM hemorhage). I had my bleed on March 24th and the surgery was 'put off' so the brain could heal from the bleed. It is a safer and easier surgery if it is done on a 'healthy' brain. I realize not everyone is in that situation and may have surgery immediately, but it really isn't bad. 2 weeks after surgery, I'm walking 3 miles a day, tooling around the neighborhood on my bike with the kids... life is getting back to normal. I was very lucky and had great care. LOVED my doctor. And every day after surgery it just gets easier, honestly. 1 week after the surgery, I had my cranial angiogram to make sure the AVM was gone (which it was), and that was actually worse than the craniotomy. Looking online for 'good' stories is hard, people tend to put the worse stuff out there... I actually wrote up my memoirs about my experience, from bleed to post-op follow-up appointment. I've attached it here... please read it when you have time, I hope it helps you not be so scared. My sense of humor helped me get thru the scary times, the sad times and the good times..... please email me directly if you have any questions (susan.harris@comcast.net). You will be in my thoughts.... You are young and have your whole life ahead of you.... this is just a 'speed bump in your road'.... you will get thru it and move on.... You are lucky, after the surgery you will be CURED (like me) and CURED is a wonderful thing.
thanks Shannon. I will keep you updated on how the surgery goes, and I hope your husband regains his energy back (and those pesky headaches go away) soon!
Shannon Dux said:
My husband had his craniotomy with avm resection from his right front lobe on 02/11/11. The surgery went well. While he was in the hospital he had a little bit of pain but was able to cut down on pain meds within a few days. He spent 7 days in the neurosurgical ICU. This was a little bit longer than expected but it was because they had some trouble keeping his blood pressure down and his oxygen levels up. He felt great and wanted out of bed but due to his blood pressure and oxygen they made him stay in bed. His biggest complaint was he was bored and did not have a window! He then stayed for 2 days in a regular room. On day 9 he went home feeling great. He still gets headaches daily but he had daily headaches before the surgery. He's also tired quite a bit. But overall he is doing pretty well. We will say a prayer for you and send some positive energy your way. Hope that everything goes well for you!
Before you go in, have you hair done. If you know where they are going to shave, ask your hairdresser for a new style and have the hair stylist do the first 'shave'. I went with a very short bob and the back shaved. The OR just had to clean it up that morning without hacking my hair. Also, I had the remaining 'long' hair put in french braids so it was out of the way and wouldn't get much blood or glue in it. You will find lots of glue on your scalp all over and it will take weeks to come off. I'm still finding some... also, get waxed, mani and/or pedicured before you go in. Nothing makes you feel worse than not feeling good about how you look.
I'm assuming you will be able to eat pretty much anything in the hospital and not be restricted. During this time, let the healthy eating go out the window. The pain meds will make you feel like crap and sick. Eat whatever you can, just eat. If Oreos are your weakness, then bring a bag of Oreos with you. Mine was ice cream and shakes so I had my family keep me supplied. Eat whatever you can get down and tastes good.
A hat and sunglasses may be important. When I had my bleed, I had photosensitivity issues and needed sunglasses and a dark room for many weeks. After the surgery I didn't have any issues, but bring them along just in case. It is very common and the sunglasses will help when the nurses come in to do something and flip the lights on.
Ask questions, whatever you can think of, ask it. Don't be afraid to speak up. You will probably go to NICU after the surgery and my experience with ICU nurses has been wonderful. If you think you can get out of bed, tell them you want to try and they will help. You have to be your own advocate in the hospital so do speak up if you need something or something is bothering you.
Morphine made me very sick and I found this is usually the IV drug of choice in ICU. Dalaudid is a synthetic morphine which I was told usually works better for people that have nausea issues with morphine. If whatever they give you is making you sick, don't be afraid for something different. They will have a list of drug options for you... a half a dose of Dalaudid worked great for me and I got off the Morphine quickly.
Hi Caity,
U will be my crani buddy. Iām having surgery on June 16th as well. These posts have made me feel a lot better. Nice to hear positive stories. Keep the faith. If God brought u to itā¦He will take u throught it! I will keep u in my prayers. Please let me know how youāre doing after your surgery.
My story can go both ways. Before the craniotomy I had a lot of gains through therapy but my emotions went through the roof. I was a wreck. I was always yelling, screaming crying, throwing things and not helping myself that way. But I was walking with very little use of my cane ( left-sided paralysis due to the avm hemmorage.) My headaches were under control ( somewhat). And what was strange was my laughing fits. My mom said they were contagious. I peed myself at least twice a day from laughing ( for no real apparent reason) We did not know this was a result of the āpersonality changesā that an avm can cause until I was in the operating room and my mom was talking with one of the surgeons who came out briefly to update her personnally. Anyway, The surgery was a success, avm gone but what else is gone? The laughing. The emotional rip tides that sucked everyone in, trying to drown and/or injur them. The surgery was May 2, 2011, iāve only laughed and it gave me a headache a tiny one that lasted mayb 2 minutes but still noticeable. My sensation in the left side has decreased, but I can move those fingers now; i just canāt do anything with them but move them. I got lucky, my surgeons cared that I was scared of how horrible I would look with this scar and they took care of me, the scar is thin and after these stitches are gone, it will be easily covered with my hair. Two pieces of advice, since we are close in age (iām 27) and you may have the same fears I had, ask for stitches, not staples. One of the nurses was surpised to see I had stitches and i told her, I requested stitches. She said, " I didnāt know you could do that, smart move." from what i hear, staples are a pain and hurt like heck when they take them out. Secondly, cut your hair short; it will be easier to wash in the shower and wonāt pull so much on the stitch es when you comb it. my hair reached my lower back before the surgery. I cut 13 inches before i went in and donated it. Its now up to my shoulders, the shortest iāve ever had it. I told the same nurse i cut it and again, " Smart move" It just made things easier for me. I may have to start retraining my brain to move my leg and arm a second time since the stroke, but i never have to worry about that ugly thing in my head again. My mood swings are completely gone as well as the migraines( this is the longest time iāve ever gone since i was 10 without a migraine.) My mom says my demeanor is the calmest sheās ever seen it, i have only cried twice since the surgery but i am pregnant so they were self-pitying in the sense that I will not be a mommy to my baby for a long time. BUT I am alive and well. I WILL walk again, I WILL NOT rely on my stupid cane for the rest of my life and hopefully my wheelchair will start collecting dust after I have this baby. You will be fine. google does not always have the answers. JUst stay positive, let your family and friends help you and be there for you. Dont be afraid to be afraid. I believe :the stronger you are going in, the stronger you are coming out. Success stories are out there, the failures ae unfortunately the ones people feed off of.
Thank you for giving such a personal responseā¦itās very brave of you, and Iām glad you surgery went well, and you are emotionally doing better, and I am sure (just by the determination in your response) that your condition will continue to improve a little bit more every day!
slith 24 said:
My story can go both ways. Before the craniotomy I had a lot of gains through therapy but my emotions went through the roof. I was a wreck. I was always yelling, screaming crying, throwing things and not helping myself that way. But I was walking with very little use of my cane ( left-sided paralysis due to the avm hemmorage.) My headaches were under control ( somewhat). And what was strange was my laughing fits. My mom said they were contagious. I peed myself at least twice a day from laughing ( for no real apparent reason) We did not know this was a result of the "personality changes" that an avm can cause until I was in the operating room and my mom was talking with one of the surgeons who came out briefly to update her personnally. Anyway, The surgery was a success, avm gone but what else is gone? The laughing. The emotional rip tides that sucked everyone in, trying to drown and/or injur them. The surgery was May 2, 2011, i've only laughed and it gave me a headache a tiny one that lasted mayb 2 minutes but still noticeable. My sensation in the left side has decreased, but I can move those fingers now; i just can't do anything with them but move them. I got lucky, my surgeons cared that I was scared of how horrible I would look with this scar and they took care of me, the scar is thin and after these stitches are gone, it will be easily covered with my hair. Two pieces of advice, since we are close in age (i'm 27) and you may have the same fears I had, ask for stitches, not staples. One of the nurses was surpised to see I had stitches and i told her, I requested stitches. She said, " I didn't know you could do that, smart move." from what i hear, staples are a pain and hurt like heck when they take them out. Secondly, cut your hair short; it will be easier to wash in the shower and won't pull so much on the stitch es when you comb it. my hair reached my lower back before the surgery. I cut 13 inches before i went in and donated it. Its now up to my shoulders, the shortest i've ever had it. I told the same nurse i cut it and again, " Smart move" It just made things easier for me. I may have to start retraining my brain to move my leg and arm a second time since the stroke, but i never have to worry about that ugly thing in my head again. My mood swings are completely gone as well as the migraines( this is the longest time i've ever gone since i was 10 without a migraine.) My mom says my demeanor is the calmest she's ever seen it, i have only cried twice since the surgery but i am pregnant so they were self-pitying in the sense that I will not be a mommy to my baby for a long time. BUT I am alive and well. I WILL walk again, I WILL NOT rely on my stupid cane for the rest of my life and hopefully my wheelchair will start collecting dust after I have this baby. You will be fine. google does not always have the answers. JUst stay positive, let your family and friends help you and be there for you. Dont be afraid to be afraid. I believe :the stronger you are going in, the stronger you are coming out. Success stories are out there, the failures ae unfortunately the ones people feed off of.
Hi. I think most people just naturally say the worst when you're talking about something like a brain operation... but there is usually always positive stuff! I myself admit I've always said the bad stuff when I talk about it, but really, it was a great success and a good recovery. You're so drugged up you won't feel much after it... besides being extremely uncomfortable in the bed (but i had been stuck in hospital 4 weeks prior to it...). One of the doctors also said I seemed like a much more positive person since it had been removed, and I've definitely noticed I've gained a lot more confidence in myself.
One day after surgery, my son was off of morphine. Two days after surgery, he was home. Four days after surgery, his personality and energy came back. If all goes well, the recovery is not terrible once you are home.
I've just found out last Thursday that I have multiple spots in my head where they are going to be doing an angiogram this Friday to find out if it's AVM or DAVF. I'm pretty nervous about just the angiogram to tell the truth, but one of my aunts called me and told me about how she had to have surgery for an aneurism and she told me that all of her procedures leading up and the surgery itself all went well and she didn't have any problems. Not a lot of details, but she said it was a good experience overall. Hope that helps and everything goes good on the 16th.
Hi Jimmy, thanks for your thoughts. As for the angiogram you are nervous about, I had one while in the hospital back in January, and I was absolutely terrified (I even started crying before they wheeled me into the OR), but to be honest, it was the easiest thing ever! Because you have to be awake, they will give you an IV of drugs, and once you have those, I guarantee you will feel zero fear, and might even feel even more incredible than you ever have, haha.
They will make you of course sign some scary waver form before you have the procedure saying all the usual things that can go wrong, but don't let that scare you, because it's just the usual hospital protocol, and for even the most minor procedures, they always make you sign scary wavers!
The procedure itself doesn't take long at all, and because the drugs relax you and make you feel calm, the time will fly by. I was so chatty and upbeat during the procedure that they had to finally tell me to be quiet, and I swear I am typically the most anxious person on the planet.
Once the procedure is over they make you lay flat for I think around 4 hours so your vein has time to clot, and then after that you're all set. The insertion area was a bit sore for about 4 days, but other than, no problems.
To put things in perspective, getting an IV in your arm is 10 times more annoying than getting an actual angiogram. Hope this helps, and definitely tell the nurses or anesthesiologists if your nervous before the procedure. They are great resources to help calm you down and make you feel much better while in the hospital.
Iāve had 3 cranial angiograms now and they arenāt badā¦ just be prepared for the recovery of laying flat for at least 2 hours, no long walks or doing stairs for about 3 days after. The last one I had was āoutpatientā and it was the worse because I came home to 2 young kids (3 and 6) who didnāt understand bed rest. So if you are having done as an outpatient, make sure you have help lined up because you will need to rest and shake off the drugs for about 3 days. I thought I feel asleep the last time, but they told me I was talking the whole time (Lord help me!!), but I donāt remember any of it. They said I was going on and on about the marathon I wonāt be running this summer. I do remember seeing 3 masked men holding a device, I felt pressure of them on my right leg, but no pain. The 2nd angio I had, I dreamt I bought a new Jeep Wrangler 4 door, it was such a vivid dream. When I āwokeā up, I was yelling āI bought a new car!ā and the staff was all laughing at meā¦ you have to understand that I drive a minivan (kids) so that was the best dream ever! Donāt be freaked by the doom and gloom āpepā talk they give you before, the worse case scenerios are pretty low risk, but they do have to mention them before you conscent. By the way, I know refer to the angio as a āfishing tripāā¦
I've had 3 cranial angiograms now and they aren't bad.... just be prepared for the recovery of laying flat for at least 2 hours, no long walks or doing stairs for about 3 days after. The last one I had was 'outpatient' and it was the worse because I came home to 2 young kids (3 and 6) who didn't understand bed rest. So if you are having done as an outpatient, make sure you have help lined up because you will need to rest and shake off the drugs for about 3 days. I thought I feel asleep the last time, but they told me I was talking the whole time (Lord help me!!), but I don't remember any of it. They said I was going on and on about the marathon I won't be running this summer. I do remember seeing 3 masked men holding a device, I felt pressure of them on my right leg, but no pain. The 2nd angio I had, I dreamt I bought a new Jeep Wrangler 4 door, it was such a vivid dream. When I 'woke' up, I was yelling "I bought a new car!" and the staff was all laughing at me... you have to understand that I drive a minivan (kids) so that was the best dream ever! Don't be freaked by the doom and gloom 'pep' talk they give you before, the worse case scenerios are pretty low risk, but they do have to mention them before you conscent. By the way, I know refer to the angio as a 'fishing trip'...
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!