Replies to This Discussion

Permalink Reply by JH on June 2, 2011 at 10:35am

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! 

JH

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Permalink Reply by brian dube on August 14, 2011 at 6:29pm

my expierience was so inlightening for the fact that i never realy fully matured in my life yet untill it got taken out. also be very thankful it isnt going to grow for another 5 years and than rupture. i think alot of brain damage i got was from it rupturing. i was dark,depressed and drunk allways before to. i will pray for you. pump yourself with addrenaline before to.

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Permalink Reply by Caity on June 2, 2011 at 11:36am

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 "takes away" rather than something that "gives back," 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! 

JH

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ModeratorPermalink Reply by Louisa on June 2, 2011 at 11:40am

Caity, There is a Success Story group on the network.  My prayer is that more people add their success story to that group...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 help....Wish you the best!  In the meantime, Keep the Faith!

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Permalink Reply by Shannon Dux on June 2, 2011 at 11:41am

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!

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Permalink Reply by Susan Harris on June 2, 2011 at 12:02pm

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.

Attachments:

• the speed bump.doc, 1.7 MB

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Permalink Reply by Caity on June 2, 2011 at 12:14pm

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.

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Permalink Reply by Caity on June 2, 2011 at 12:16pm

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!

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Permalink Reply by Susan Harris on June 2, 2011 at 1:50pm

here is some advice for your hospital stay:

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.

 

I'll post more if I think of anything....

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Permalink Reply by Chikeena Harrell on June 2, 2011 at 8:42pm

Hi Caity,
U will be my crani buddy. I'm 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 it..He will take u throught it! I will keep u in my prayers. Please let me know how you're doing after your surgery.

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ModeratorPermalink Reply by Barbara H. on June 3, 2011 at 12:22am

Hi Caity. Feel free to check out my page on here. Here is the link to Success Stories sub-group on here...

http://www.avmsurvivors.org/group/s

Just say No to Negativity!!! If you feel the need to vent...we are here for you!!!!!

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Permalink Reply by kristi on June 4, 2011 at 5:43pm

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.

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