Hello, I am a new user here (21 year old male). I have my surgery scheduled in 16 days! I have an un-ruptured grade 2 AVM in my left occipital lobe. I was just wondering if anyone who has had a craniotomy/AVM resection has any advice for preparing for the surgery. What should I expect in the weeks following? Anyone who has had visual field deficits, how did you adjust to that?
Welcome, and its great you found us! I had a grade 2 left temporal that ruptured, but went with gamma knife on the recommendation of the surgeon. Mine was fairly close to some eloquent areas. Positive point is your age for sure, younger folk bounce back quite a bit quicker. I was 48 when my adventure began. We will have some members comment for sure, we have a ton of experience here, so sure hope we can help!
I spent a weekend in Madison a couple years back, it was a great city. I sure met some amazing folks.
Take Care, John.
Like I have said many times over - “Welcome to the board that no one wants to be a part of”
Craniotomy your only option? Who/what facility is performing the surgery?
There is no physical way to prepare yourself for this - my AVM never showed a sign that I have noticed until it caused a rupture. The neurosurgeons at Barrow Neurological decided to try an embolization as first round of treatment. Since I just suffered a severe bleed & was on a verge of another one at any time. They told me an embolization would “should” be effective & since mine is a dAVF + location, it was close to being inoperable.
Mine is the same area as yours - left occipital lobe(about 1” back towards the back of my head after my ear). As far as I can recall, mine is/was considered a grade 3.
Hi! You’re from Wisconsin too!
I agree with John & Mike, there is no way to physically prepare for a craniotomy/AVM resection. The most you can do is prepare for it emotionally & I don’t know how to do that myself. My AVM ruptured about 11 months ago, & I’m still emotional about it, but it’s gets better every day.
All the outcomes are different so I can’t say much, but I’m sure being out in Madison the doctors/nurses will go the extra mile to make you feel comfortable.
The decision to do a craniotomy was recommended for me since I am young and because the AVM is pretty superficial and of a lower grade. My doctors said they didn’t want to give a younger person radiation if they didn’t have to. I am blessed that my AVM is unruptured and they said this was the most definitive way to get rid of it. I am getting it done at UW-Hospital by Dr. Mustafa Baskaya. I think I am in good hands.
I am focusing on positive thoughts and trying to keep those around me from worrying. I think my mother is more anxious/worried than I am.
@eazy welcome and best of luck with your surgery.
I have not had a craniotomy but had a couple angiograms and embolisms. And other surgeries.But I have seen a craniotomy.
Not sure if there is covid restrictions at your hospital but one thing I always do when I am in the hospital or someone close to me is the hospital is I buy a few gift cards like $10- $20 face value for like Jamba Juice and hand them out the good nurses and medical assistants. Esp if you end up staying more than one day .
Pack your own toothbrush toothpaste lip balm.
Sometimes you get a room with a broken tv so you might want to load some movies onto an iPad that someone can bring in for you.
Also if you like tea they usually only have Lipton . And for some reason only half cans of ginger ale.
Make sure that your room at home has clean sheets and is comfortable as you want .
Have those ice gel packs just in case your head hurts. The guy that had his craniotomy by dr Lawton said he had no pain. But I always have more pain after my procedures.
Make sure you have Tylenol or whatever you can take for pain on hand.
Your favorite comfort foods and drinks.
Just listen to your body and rest when you feel tired and be sure to hydrate.
Let us know how you are doing
Shoot, I would be way more worried if it was my son - I’ll take another one to head all before I watch him go through it.
Like Angela mentioned, that pretty much covers your essentials - guess, it takes that womanly approach
Every AVM is different & so are we. I’ve seen younger folk, such as yourself shake off a resection without a hiccup. Just take it easy, let it come to you. Recovery takes time. . . Def wish you the best of luck!
Thank you all for the wonderful advice. I’ll be sure to stock up on the essentials and focus on healthy habits and positive thinking. I feel blessed that my AVM has not ruptured. Luckily, my seizure happened when I returned home from finals and my parents were able to take care of me. I don’t know if my roommates would have been able to find me, or if I would even know about it. I am within the 2 week mark and have three more finals to finish (haha) and I am focusing on staying hydrated, getting enough sleep, and managing stress. I have wonderful people around me and I hope I will be able to recovery quickly. Thank you for giving me some peace of mind, I believe everything will turn out alright!
Hi Eazy. Sorry you are here but be glad to deal with it before rupture. My son (same age as you) had a craniotomy in December. No way to prepare or predict just try to stay calm and POSITIVE. It went better than expected, so did recovery. I hope yours will do the same. to you and your family.
Welcome. I was very much in your shoes. I had a grade 2/3 left occipital lobe, un-ruptured AVM that was removed with craniotomy/resection. It was found after I started complaining about headaches, right side face/body numbness, and facial/neck swelling. They thought I had lymphoma and started out with a CT scan of my neck, saw a shadow at the back of my head, and called me in for a MRI the next day. It wasn’t deep in my brain, but it was weak and prime for rupturing, so they moved pretty quickly to get it out,
I do have some visual, cognitive issues, and migraines, after the surgery. And recovery was not quite as short as they said it would be. But the alternatives of a brain bleed are not something anyone should go thru. I also was given the option of gamma knife, onyx sealing, or craniotomy. I choose craniotomy because I wanted a ‘one and done’ surgery; I was considered a low risk patient and it was thought to be the most effective, and the other two types of surgery can have some side effects like the onyx glue slipping off to the wrong part of the brain, and gamma radiation causes necrotic tissue scarring that can lead to increased seizure risk.
Some basic things I can think of that might help-
Your Doctor probably made this appt for you already, but a Baseline Vision Field Test with a Neuro Ophthalmologist before your surgery is important. This will give them a baseline for after the surgery to work with if you have any visual deficits. Without one beforehand, they have no idea if you had already lost some vision, or had some dark spots, or what’s a new deficit.
Bring sunglasses to the hospital. Yep, sunglasses. I can’t stress this enough. Your eyes will be very light sensitive for awhile. I didn’t have any, so my husband found a pair of the tackiest Lady GaGa glasses he could find. I lived in them the first three weeks after surgery. After that, I didn’t need them much. But when you need them, you really need them.
The nurses from my Neurology dept made everyone who had a craniotomy, a teeshirt knit hat that was seamless. It’s a long beanie similar to a chemo hat- in fact I ordered some from Amazon and used those so I had a couple. There’s a few good reasons to have them- they seriously protect your head and incision. It’s like extra cushioning. When you come out of surgery, they have your head so seriously bandaged up you won’t need them, but the minute they take the bandages off they’re awesome. I also learned that they’re long enough to be pulled down over your eyes to block out light, when those sunglasses aren’t handy. Definitely a plus when a nurse comes into the room and flips on the lights without warning.
Chapstick. I know I know, it sounds like a girly thing, but those hospitals get so freaking dry. Water, ice cubes, and ices (more on that in a sec) are your best friend. I’m in MN and the nurses station stocked Kemps Orange and lemon ices on the floor. It’s basically like a slushie in cup, it sounds silly but seriously are heaven when you’re hot, dried out, and don’t feel like eating much.
You probably won’t be wanting to read much or watch TV the first week or two. Your eyes will probably be tired out. As I said, I did come out of it with eyesight deficits, but that first week my eyesight was really wonky, and had trouble focusing. Music was my best friend. Nothing overly loud or phrenetic but stuff I could kinda drift off to. Don’t be surprised if texting/email is hard for a bit (again with the tired eyes), but yay for microphone texting!
I hope this helps. I’m sure you have lots of questions, and please feel free to pm me.
Hi, I haven’t posted before but read your post and thought I would reply. I had a massive intracerebral haemorrhage (8cm bleed in my brain) last November out of the blue and was very lucky to come away with no side affects. After investigations they found that I had a grade 2 right temporal AVM which was obviously the cause of the bleed. Once it ruptures the chances of further rupture are greater. They said that because of where mine was located that I was a good candidate for surgery and that the craniotomy would be a walk in the park compared to what I went through with the haemorrhage. I am much older than you but reasonably fit and healthy (well i was for 48 years haha). I have suffered some visual field issues. Basically i have no left peripheral vision in either eye, but other than that my eyesight is still good. So i cant ever drive again unless somehow it improves but i look at it as if that is the worst thing that has happened then I have been very lucky. I will add that the rupture actually gave the surgeons more room to play with when they did the removal as the bleed had already caused the damage if that makes sense. So the visual field damage was from the bleed not the craniotomy. As far as the op goes, i didn’t have pain afterwards, just a bit of soreness from the scar and a couple of mild headaches. I did take all the morphine i was offered though! I had no issues with eye soreness or sensitivity to light and I was only in hospital for 2 days and recovered at home very quickly. Just make sure you do all the right things and take all the advice re recovery. I just watched lots of boxsets and listened to podcasts.
Hope this helps a bit, apologies it is so long, i started typing and got carried away.
I wish all the best and take care
I also did my surgery at Barrow
Hi! I haven’t had a craniotomy yet but have mine scheduled for May 23. Similar as yours, grade 2 didn’t bleed however it did cause an aneurysm that ruptured and that caused a bleed. So just wanted to say good luck! And this thread has been so helpful as I prepare so thank you for starting it and thank you to everyone that has replied.
Good luck, Jenifer! We’ll be rooting for you
And @eazy who I think is up for surgery this week.
Thanks! It’s scary and exciting all at once.
Yes! My forgetful mind. @eazy You got this!
No way to really prepare you just have to be patient and strong afterwards and fight everyday; you have two things going for you you’re young and it’s un-ruptured.
I had an AVM rupture along my right parietal / occipital lobe and my vision field deficits were fairly significant and it really affected my independence… you don’t really adjust to that you just learn to deal with it, but you won’t necessarily have vision field deficits as it’s a controlled environment versus an uncontrolled rupture so best of luck and not having any problems in that area!
UW … fun School… Maybe too much fun for me…probably should have studied harder when I was there!
Hi! I’m sure you already got some helpful comments- I wanted to comment on the field of vision loss since that’s probably affected me the most! It depends person to person, but you learn how to adjust. It is strange and takes time to adapt to, but it’s feasible with patience and acceptance!
I’d love to talk more about this if you want! I’m glad I’m not alone- being a 22 year-old girl who has gone through AVM related struggles, it can be difficult to find people in similar age ranges and situations! I’d love to connect :)!