Craniotomy survivors

Hi all-- my craniotomy is a little over a week away (I have pre-op MRIs/bloodwork on 3/24 and the actual surgery will be 3/25). For those of you who have had your AVM removed through a craniotomy (especially under non-emergency conditions), is there anything you wish you would’ve known going into surgery? This is my first time having any sort of real surgery (I don’t count getting my wisdom teeth out), so I’m pretty freaked out. The nurse on my surgeon’s team whom I’ve been emailing with all of my questions (she’s great!) has told me to be prepared to wake up with lots of things stuck in me that weren’t there before (IV near my left collarbone, wrist blood pressure IV thing, catheter) and to push my nurse button immediately if I think I’m going to throw up. She said I’ll have some pain from the incision, but that they’ll give me vicadin as soon as I ask for it. Is there anything else that you experienced that I should know? I appreciate whatever info you can share!

Oh, I forgot to mention that I’m having microsurgery. I’m supposed to be able to keep my hair, and they’ll only be cutting a small (like silver dollar-sized) piece out of my skull.

HI Jenny, My name is Donna and I had a craniotomy along with a embolization six months ago. The best advise I can give you is to make sure your affairs are in order. They never told me what to expect after wards …You are already ahead of me because you found this site. I don’t remember the surgery part of my procedure except that they had me in a drug induced coma for a few days.That was to prevent movement. Please forgive me , I don’t want to say any thing that will scare you any more than you already are, but I wish someone would have told me that recovery is the hardest thing you can imagine. I hope and pray that you have a good support system around you. When I woke up in ICU…i couldn’t talk. they had a tube down my throat. I had lost my voice for 4 months. I could’t do anything by myself. they shaved and cut behind the left ear and thankful i had long hair for it covered my bald spot, and large scare. The induced coma and meds. put me in a very stange world. It is my faith that got me through those dark days.
Please keep saying you can and you will get through this!It is hard work and we will all be praying for you . Just know that everyone has different experience and so will you. May God Bless YOU and May all the Angels hold you in there light and love. Please have someone let us all know how you are doing because you won’t be online for awhile and we will be concerned. OH, one more thing, bring PJs that don’t have long sleeves and I bought a cheap down comforter because the hospital are always cold . If I can help answer any more of your questions , Please don’t hesitate to ask. We’ll be praying for you. let us know through some one how you made out. Make sure the doc. get all of it and don’t leave the stems. these things are like plants. they grow back1

Dear Jenny, my son had craniotomy last October. It can sound odd but having a craniotomy is a good thing for avm pacients, take it as an opportunity to have it removed for good and at once. I am sure you wil find it lot easier than people tell you. Daniel for instance, had not lots of things stuck and not pain at all. Another thing, being a non emergency surgery makes a big difference for the doctors, the way is clean for them and so it will be faster. Be positive, it helps a lot. Grab all you energy. I will also think about you and send my prayers.

Hey J - I had a craniotomy and I would agree with Erica - it’s the best thing to do… You will get rid of the AVM completely, you will not have to worry about any residual problems, and although it takes longer to heal than radio-surgery, etc it’s just really nice to have the piece of mind knowing that it is gone completely and you don’t have to even think about it any more, etc… It was probably the best decision I ever made, I’m doing really well now…

Thanks for the info, Donna. Did you have to have emergency surgery? And did your doctor explain why he put you in a coma? My AVM is supposedly in a fairly unimportant part of the brain, and the angio showed it not attached to anything significant. I know there’s always a risk of stroke during surgery (is that what happened to you?), but my surgeon says I should only be in ICU one night (and will be forced to get up and walk that day) and then a regular room for a few more. What were you told before your surgery (if it wasn’t emergency)?

Hi Jonah–What was your recovery process like? My surgeon said I’ll feel more tired than normal and will be easily exhausted by even the slightest physical activity for about two months. Other than that, he thinks I’ll be fine, although I have to stay on my nasty seizure meds (I hate you Keppra!) for a month or so just as a precaution. How soon were you able to return to work/normal life?

Thanks for your cheerful news, Erica! I hope your son’s recovery continues to go well! Hopefully he’ll never have to deal with all of this again and be able to live as if it never happened!

Thanks, Liam!

I had an AVM craniotomy six years ago.

You are fortunate that yours is not in an emergency situation, and so you should have a much better outlook. It has got to be better than to have the procedure during a wet bleed.

It is my prayer for you that all things will go fine, and you will make a record breaking quick recovery!!!

Hi Jenny
I haven’t experienced the craniotomy myself, but I think Jonah and Erica are right - it’s great to have the AVM wiped out once and for all. I do however understand that you are freaked out.
I wish you all the best! X

Hi Jenny, I have thought about you all night and worried that I came accross to strongly with my story. So once again I will try not to say anything negative that might cause more fear> BUt I promise to be honest to a fault. I would have loved if i had someone tell it to me straight instead of candy coating things.
So here goes, my surgery wasn’t an emergency. They found my AVM due to a fall and black out I had.My AVM was 2/3 cem. so it was concidered small but located in the deep part of the Cereable Cortex.the part of the brain that controls motor skills, and seeems like everything. I went in on 9/6/07 to have them embolize the spot. Prior to that I had angiograms to pin point the location. So any way, when I say they Embolized it i mean they went through my artery and shot a glue like substance into my AVM. thats when they had me in a coma …the next day, the cut as i said behind my ear…shaved my hair(just in that spot) and they told me the same thing you have been told. They cut the skull and then went into the brain to remove the AVM. the surgery took 8 hours that day and 6 the day before. I was in a coma(drug) induced for five days. I was told that I would be IN ICU for overnight that turned into ten days. I didn’t have any complications. …WHEN I woke up I couldn’t talk because they put that tube down my throat which hurt more than anything. I was surprised to see that i couldn’t hold or even move my head. I couldn’t walk ,talk , hold anything. no, I didn’t have a stroke but had all the sym. of one. THEY TOLD my family at that time that they got all of the AVM including the stems. The doc. were pleased. After ten dayd in ICU i spent the next 20 days in rehab. Learning how to do every thing again. EVERYTHING.I couldn’t take my own shower for many months. I still can’t swallow food on my left side, and dribble food out of my mouth all the time and don’t feel a thing. PLEASE know that any type of BRAIN SURGERY is important. I pray all goes as your doc. said it will and you will be up and walking the next day. I was told the same thing and that is my story dear friend. Sorry to say…but you are having BRAIN SURGERY. Nothing simple about it…you will make it through. JUST keep TELLING YOURSELF YOU CAN! Get off of the drugs as soon as you can or go to non add. kind. YOU CAN AND MUST DO THIS …PLEASE understand from a good place I share my story with you and your family. I am still recovering and so thankful that they were able to get it all. Some are not as lucky as myself. They still have their AVM.
HOPE…this helped. please let me know how you make out. SENDING Angel light and love to you!
GO take care of it girl you can and will get through this !!!
Bless you Stay Strong…FIGHT YOUR WAY BACK…D


Sorry to hear you have to go through this. If your hair is long leave it long… that is what I did and
the long hair covered the surgery area pretty nicely. Not sure where yours is located, mine was the right mca. Have a nice bed jacket and be sure to take home some of those extra handy deals to wash your hair in the cap deal. That was nice. I thought the surgery went well and I was up and about fairly quickly like… walking around the block (very slowly with someone) a week later. Your energy level gets depleted rather easily during recovery and emotions can roller coaster.

Hope some of this helps

Thanks for the advice, Donna! My hair is almost down to my shoulders (my neuro nurse also advised me not to cut it before surgery), so I’m hoping that will be long enough to cover up the incision. I’ll be happy with a bald spot and an ugly scar, though, as long as everything else is fine and this stupid AVM is gone! =)

Hi Jenny!! I had a craniotomy on Nov 6, 2007!! Everything your nurse told you is true. It really is a scarey thought to go through but you are better off getting it done and taken out. The one thing i can say is stay calm afterward and stay focused on the healing. i had mine right on the top of my head so i have a HEADBAND SCAR!! It is scary but you will be fine!! i wish i had you all tell me this before mine cause i was scared to death!! BUT I FEEL BETTER NOW AND I AM A NEW AND IMPROVED PERSON!!!

take care and rest up afterward!! you will be fine!!!
i will be pryaing for you!!

Thanks for replying, Tara! I’m glad your surgery went well and that you feel better AVM-free! I think I may end up with a headband scar as well; my surgeon said the most direct route to my AVM would be straight through my forehead, but since he figured I wouldn’t want such a conspicuous scar, he said he’d try to cut up in my hairline (he gestured towards where my bangs are now). I’m having my husband take pictures pre- and post-op, and I’ll post them on my page here as soon as I can. A guy who had 2 surgeries for moyamoya disease (performed by my surgeon) did that, and I found it helpful to see that everything didn’t look as bad as I had imagined.

i will post my pictures so that you can see them!! ! go look !!

Thanks, Tara! Your hair has grown back so fast! That’s awesome that you can’t even see the scar anymore!

see so you dont need to sorry so much!!!

Hi Jenny,

Excuse my while I figure out how to post here. Not clear to me yet. I did want to
add on that
-you might be taking alot of different medications for a bit and that you
and your caregivers need to know that the medications can effect you 'normal’
self. Sometimes I would find myself a little on the short tempered side and now
I can look at it and know that some of that was due to the medications I was taking.
-The other thing is that once in awhile things could seem overwhelming, example if to many people
were talking at the same time, I couldn’t keep track of what was going on, couldn’t
understand why I was feeling confused a bit…
-and again the emotional ups and downs.
These things too, will pass. :)donna

Hi Jenny
Everyone is right. I had a craniotomy Sept. 29, 2005 and yes it is very scary the not knowing what is going to happen. My surgery was 12 hrs. and I was in ICU for 5 days, they will probably tell you 1 day but it will most likly be more. The hardest thing is after to relearn many things and to remember. I lost some memery but slowly got some back. After all this it is better than dieing. It will soon be over and you will be better as I have done. My prayers are with you and you husband. Have someone update us. Be strong I know how you feel.