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AVM Survivors Network

Six Months Post-Craniotomy - Looking to share experiences

Hi everyone, I’ve lurked here on an off for the past 18 months but this is my first post.

I was diagnosed with a right temporal AVM when I was 28, in March of 2018. The AVM was found by accident after I was sent for an MRI by my GP to rule out any malicious causes of migraines I started getting.

I will cut a very long story short (although if you would like to hear it, I am more than happy to share) to say that in March 2019 I had a craniotomy to remove my AVM, and Saturday last week was the six month anniversary of my operation.

I think I am incredibly lucky - I had no symptoms prior to my AVMs discovery, my surgery went relatively smoothly (there was a complication, but it caused more trouble for my surgeon than for me!) and my recovery has been good.

During the year between my diagnosis and surgery I often visited this site, but I found it hard to read too much - and I won’t lie, a part of me feels a little bad posting this when compared to some others I have had a very easy ride.

But I also hope that maybe I can help someone, even just a little bit. Living with my diagnosis was a year of incredible stress and fear, I think it has fundamentally affected who I am as a person and has affected some of my relationships. I don’t think its easy to talk about something like this with someone who hasn’t been through it - I don’t think people understand, as much as they try to.

Although the AVM itself didn’t affect me much, psychologically I had a pretty rough year, and even now I think it still affects me. I would love to talk to anyone who feels or has been through the same - and I would also like to talk to anyone who has had a similar surgery to mine to find out what your experiences have been like.
Although the surgery was fairly plain sailing, recovery was tough for me and I still struggle to understand if the way I feel today is normal for someone in my position. I find myself very easily exhausted, I don’t have the strength or stamina that I used to have.

They say you should be the change you want to see in the world, and when I was struggling to decide what path to take after my diagnosis I desperately wanted to talk to someone in a similar position to me. I kept finding stories that were just too frightening, and I couldn’t find the information that I really wanted. Although I knew that there were no certainties in regards to the outcome of surgery, I spent hours and hours just trying to find out what it would be like. I wanted to know what would happen before, during and after.
So I hope that maybe one day I can be of help to someone who is taking the same path as me. I don’t know what it’s like to experience a bleed, or seizures, or any of the things which so many AVM sufferers struggle with - but I know what it’s like to live in fear, to feel alone and lost and so so unsure of what you should do.

Sorry for the long post, I hope everyone here is as well as can be and I look forward to hopefully speaking to some of you :slight_smile:

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It is great you’re here with us! Never feel bad about a successful outcome, we will all be thrilled for you. There is so many variations in diagnosis and outcomes, and trust me when I say most of us hear you on the psychological impact. We have a lot of folks who come here with a diagnosis for a variety of reasons, and wonder what to do next. Sometimes a few options are available and sometimes not, you’re a voice of experience! Take Care, John.

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Hi John, and thanks, I suppose you’re right.
I still find it hard if I let myself think too much about everything, it sends me in to a bit of a funk. But I don’t want to not think about it either, if that makes sense. A lot of people tell me that I’m fine and so I shouldn’t worry about what’s happened in the past, but I don’t think it’s that easy. It’s a part of my life and a part of who I am, and I need to process it all.
And like you say, I’ve been there now so hopefully I can be of help to someone else :slight_smile:

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Hey Sarah,

“I still find it hard if I let myself think too much about everything, it sends
me in to a bit of a funk. But I don’t want to not think about it either, if that
makes sense.”

Ohh, does that make sense?? Very much so.
BUT DO NOT be judging your recovery to somebody else’s. No two brain’s are exactly the same, no two surgeries are exactly the same and no two recoveries are ever exactly the same. That thing on our shoulders, our heads, contains the bodies computer system our brain. Now, if you open your computer box and poke around in there, there’s going to be a reaction. It may spark, it may short circuit, etc. And the dr’s have opened up the box that contains your computer. Your head. 6months is still very early on in your recovery and that’s from both the physical and emotional scaring. This is a BIG event and not everybody goes through it… ….Luckily for them. But for those of us who do, recovery is a journey. You don’t wake up tomorrow and it hasn’t happened, you live it. And for some of us it’s a VERY long journey.

Yes, it’s in the past, but yes, it’s all very real. Can I ask a favour? When you learn how to ‘simply move on’ can you tell me how. My last major neurosurgery was in '13 and still today I’m reminded daily. I have headaches, BAD headaches and OMG Headaches. My stamina, once an asset, has up an vanished. Gone.
I have found I need to keep myself occupied, doing something, anything to give me something else to think about other than my $#@^*& Head because it REALLY can get you down. I now have to pace myself in my activity, ‘slowly’ was not a word I knew, now, I don’t do anything but slowly and it gets a bit frustrating. And don’t discount the psych impact, it can be MASSIVE

So come talk to us. We all know it 'cos we live it too. The fear of ‘What if…’

Merl from the Moderator Support Team

I no somewhat how you feel with getting exhausted. For my physical health it’s great but sometimes at work when multitasking I get exhausted. I think it’s just my brain has to think too hard to keep on track. And after having multiple brain surgeries your brain gets a little tired. It’s tricky explaining to others at work that I forget things easily but look like you’re average person.

Don’t feel bad about having had an easier ride than most of us hun. It’s perfectly ok although I’m a bit jealous lol! I have had alot of symptoms growing up from nosebleeds to unexplainable headaches and numbness/weakness on my left leg and arm and even face completely at random times but I always got lame explanations from drs from overweight ( I was only 10lbs heavier than the avg weight for my age) to a pinched nerve and allergies (like really?!) ohh and when I would throw up I was probably catching a bug when it would happen at random usually when Id wake up at random (little did I know that I had had a seizure and Lucky to be alive)
I experienced the complication of hydrocephalus post first rupture and had a hemorrhagic stroke after my 2nd rupture and so I got both embolized and had a craniotomy and I still experience exhaustion at random times to the point that I can easily fall asleep sitting down if I’m comfortable lol! Aside from that recovery although hard and painful st first has now been coming easy for me but my left hand still nothing just my arm sometimes cooperates. I’m not going to lie, I really miss being able to use it to do basically everything and feel I took everything for granted and just want to wake up from this nightmare but it’s not a dream duh!

Hi Sarah,
I had my surgery back in 2011. Craniotomy…stealth guided… I had suffered for years before my surgery and was told that my headaches were just depression… long story short… A wonderful Emergency Department doctor finally believed me and sent me for a CT scan and a month or so later I had the surgery… But the fear I suffered in that month was immense and I can’t even imagine having to wait a year… I am now eight years from my surgery date and I celebrate every April 28 as my brain re-birth day…
My craniotomy screws still hurt and wearing a ponytail can be excruciating at times…I can’t tell you how many times I have hit my head since and I actually have a dent in the bioplast they used to replace the skull area they removed (the CT technicians were in awe of my dent… Hehe)

My neurosurgeon was fabulous but really no help after I was cleared from his standpoint… I felt really alone and didn’t understand what was happening to me or why I felt the way I did… I was cured… Wasn’t I? No one had explained brain injury to me. I was losing my family members because I was easily angered all of the time… I was saying things to them that usually I would have just kept in my head…(mind you it was nice not to hold back for awhile… Hehe). I slept a lot of the time… I was told that would get better that I was just recovering…
Thankfully I met a doctor whose brother had suffered a brain injury and she sent me on the path of recovery or more so acceptance of my situation. She prescribed me modafinil to help me make it through the day (mind you I still nap when I really need too)… She found me a brain injury group to attend where I was able to learn more about the situation I was in… I found out that my anger and severe bouts of depression were quite normal for my situation… I learned about pacing and ways to accept that I had been through something very major and life threatening and allow myself to grieve for what I had lost which also gave me the ability to move forward to find out what I still had. I could not return to the field of finance that I had been in… I had lost the ability to do mathematics… Took me a couple of years to be able to do simple addition (I can now, but I no longer like to… Though I remember doing a happy dance in a shopping mall when I was able to figure out the cost of something… Hehe). It was a couple of years before I was able to watch videos on the internet of AVM surgeries… My brain did not allow me to accept what I was seeing…
Now, I am a medical transcriptionist who excels in the field of neurosurgery and brain injury… Lol… I choose my hours around my fatigue levels. I take duloxetine for my bouts of depression (which I have learned are not fault of my own but a symptom of my brain injury and well… My family likes me again).

What we have been through is very rare in comparison to a lot of the illnesses out there…A lot of the general public know nothing about our condition and really have a very hard time understanding that lovely tangle of veins we have that wreak havoc (my mom explained to others that it looked like a giant spider in my head - doesn’t that one just give you the creeps… Lol)

All in all give yourself time to accept what you have been through before you try to explore who you are now… Sure I miss my old hyperactive self… And I really hate naps… But I have found workarounds for everything - but that didn’t happen overnight. Take time to heal and grieve and when you are ready… Move forward - but don’t rush it. Don’t expect those around you to understand what you are feeling (other than those of us who have been there) and never NEVER feel bad for feeling good! Live one day at a time and look for the happy in life whenever you can. You are alive… You made it and you have so many more good memories to replace the bad ahead of you.

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Hi Sarah!
Your post is 10000% relatable. I was always a bit of a hypochondriac prior to learning I had an AVM, so I had always trained myself to STAY AWAY from the internet. But shortly after discovering I had an AVM (I found out after having a seizure at 22), I didn’t know what to expect, the dangers, recovery. This space was the only place I felt I could find legitimate stories, and after reading them I came to terms that AVMs aren’t as rare as they say they are!! My recovery was exactly like yours, no issues at all, and I came out so thankful. Many people unfortunately never realize they have an AVM before it’s too late, especially an AVM in your brain. No issues physically, but mentally sometimes I do question things, if surgery affected how I am, or scared something else could happen. It’s hard to get out the the habit, but I try my best to make the most out of each day, life is too short to live in fear! Glad you’re doing well!!

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I can relate. 3 months post here and feeling so good, it’s almost like nothing happened. But it did. And i waited TWO YEARS in fear. I know exactly what you are saying when you are talking about how lonely that is.

I know just how lucky I am for so many reasons, but after all of this, I also know how strong I am. And I know that whatever comes my way, me and my family will get through it together. Although I like to believe I always knew that, I think that having had this experience has me more grounded and grateful. That’s why I think I don’t necessarily want to stop thinking about my experience…I don’t and can’t pretend like it didn’t happen. I agree with you that this just take a while to process?

Anyway, thanks for sharing. I haven’t really visited the site since I suddenly felt fine. I’d like to be able to help someone else too. Someone who may be feeling scared like I did.

Kyle

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I am 9.5 years post craniotomy it has been an experience to say rthe least since I didn’t know I had an AVM nor had I heard of AVM but a careflite helicopter trip and an emergency surgery saved my life it wasn’t easy at first because I wanted to get back to everything after my 5 months off work , wanted my hair to grow, etc the migraines headaches started when I went back 2 work. Carrie Underwood’s Jesus Take The wheel became my theme song. I want to help others as well. Now, I track others as much possible that have been diagnosed with AVMs. I was glad when my neurologists visit dropped from 2x a year to annually found a med that works well for me better than Keppra

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Thank you for your post

Do you still find it hard to read I noticed that same problem even after seeing a optometrist?

Hi Merl, you’re absolutely right - and thank you for making me laugh, I suppose there is no simply moving on. It’s tough to learn to accept your new self. I struggle because I constantly feel like I’m 95% of the way there, back to “normal”, but I can’t seem to make that last 5%.

I think the biggest mistake I made during the time I was living with my diagnosis was not seeking any psychological help - I must say looking back I find it surprising that it’s not something that is offered when you’re facing something like this. At least it wasn’t for me. My boyfriend would often try and convince me to get some support and I know I ought to have listened to him. I went to see a doctor and cried my eyes out at one point because I was so frightened and I didn’t know what to do. All she did was give me the name of an AVM website that had been unused in about ten years!

It’s very hard to explain to people the after effects of living with so much stress and going through such a big thing, especially when I’m sure I seem completely normal to most people. I know I am lucky that I’m living fairly free of side effects, and it’s hard not to feel guilty for struggling with it when others have it worse. But you’re right, all of our experiences are unique to us, and I know in my heart that one persons’ experience being different doesn’t diminish mine. I guess I’m just having a hard time getting my brain to accept that!

Thank you so much for replying to me x

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Hi, I’m pretty good with reading now - I struggled after surgery partially because I’m a contact lens/glasses wearer and couldn’t use either of those things for a while (three cheers to my boyfriend for setting my iPad font size to massive!), and also because I couldn’t concentrate for very long. These days I do find that too much screen time makes me tired though.

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@Kyle53 that’s really true. I got my first tattoo a couple of months after surgery - I knew that one day my hair would be all grown back and my scar would be almost invisible, so I wanted something I could look at and remind myself that I did it, I got through it and if I can do that I can do anything.

I’m right there with you on feeling grateful too - it was the strangest moment, I think it was maybe day 5 of my stay in hospital, when I was finally able to talk to the other women on the ward with me. They were all lovely and had been really curious about my surgery, as although it was a neuro ward their procedures had been quite minor, and so they hadn’t understood at first why I was so quiet and tired. As I got to know them I realised that although it sucked for me right then, I was pretty much through the woods. One big shitty moment in my life but then it would be over. However, these women had conditions that had been causing them pain and sickness all their lives, and would probably never be fully cured. One of them had been in and out of hospital for 25 years and would probably continue to be. I remember lying in my bed and thinking, I’m so f***ing lucky, and so grateful. It doesn’t mean that I don’t still struggle with what has happened, but I try to remind myself that it’s worth it, and that I should appreciate all the good things now.

I really hope that we can be there for other people who are going through the same. I know not everyone’s experience will be like mine, but like you say if we can just help someone who is scared then that would be great.

@JillPW omg the ponytails! I tie my hair up all the time, but just one hair being pulled a little too tight and it’s headaches all day long! I genuinely can’t explain how good it feels to speak to someone who relates to that - I sometimes grumble about it at work but all I get is sort of confused sympathetic nods. It seems to minor, but it’s just another one of those things which is a part of this “new me” I have to learn about, and I often feel like other people don’t want to hear about it?

I get pain in my screws (or rivets as my surgeon called them?!) sometimes, although seemingly less these days. Thats amazing that they replaced part of your skull with something else, I didn’t realise that was something that some people had. I have to say that aside from all the bad parts, I do find the whole thing fascinating. I’m thinking as asking the hospital to give me all of the documentation they have about my case and my surgery, someone told me that you’re allowed to ask. I also sort of can’t wait to see my latest scan results… I want to see the bits of metal in my head! I actually watched a video of an AVM resection a month or so after surgery, and it actually really helped me understand why I felt so rubbish… when you see how rough such a “delicate” surgery is it sort of makes sense!

It’s very true I have found that once you are medically okay you seem to be left alone. I’ve only seen my surgeon once since I was discharged, and although it was nice and reassuring to speak with him again and to know he was pleased with my progress, I also felt a bit empty as I still had so many questions. He told me tiredness and forgetfulness is normal and will pass… but why? How can I deal with getting back to real life when I feel like this? So many questions, but I think maybe at the time I was still a bit… fuzzy post surgery hahah. I saw a lovely GP for a while though who was very caring, and totally understood how traumatic surgery and recovery was. I have moved house since and am actually very sad that she is no longer my doctor. I keep meaning to make an appointment with a new GP, but I have this fear that my questions will get brushed aside and I’ll just be told “it’s normal” and shown the door.

Thank you so much for your reply - you’re so right, the bad stuff is behind now :slight_smile:

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This is a great post! To relay these experiences is so valuable to all of us who end up here afraid, seeking information and support from those who have been there! Thanks to everyone! Take Care, John.

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Hi Sarah,

You may have had an easier time than some people on here but that is not your fault. I have also had a relatively easy time compared with some of the brave and resilient souls in these pages.

Things about neurology had always scared me - not being able to control my body in a seizure for example - and there I was with my worst fears actually happening, like a predetermined, revengeful and frightening nightmare.

I have some unpopular views sometimes but in my case I looked at things the other way around in the end. I started reading about Buddhism - not as a religion but as a way of living and coping. The idea is that it is the wanting that last 5% back is the actual problem, not the fact that you don’t have it back. Like it is a desire that is eating you up, not really the loss. Now that sounds a bit tough and all the wrong way round but it is an interesting idea and I have moved forward with that in mind. Life seems to be about having it all at the start - a young body and mind - and then losing abilities slowly along the way - those things can be the ability to think like before, move like like before. It is sad to have once had it and lost it, as it were.

I try to remember that everytime I get up in the morning that something could happen today that could change everything. We always expect to arrive safely at work, to still be OK for that planned holiday in a few months. The things that have changed my life have happened out of the blue - on normal days, quite unexpectedly. Good things and bad. But they have had long-lasting effects. I find that accepting that the next “loss” will come at some point, not of my choosing, makes me happier to still have what I have today. You know - take that walk cos you may not be able to tomorrow. Go out with friends this evening - while you still can. Take the trouble to do that cleaning today cos you may one day wish you could still do it.

This can sound so negative to some people. But the idea is to accept things and feel grateful most of the time rather than being afraid most of the time. I am not a guru at this but I find it does help a bit to “remember” how much you have now and be thankful and enjoy it while you still have it.

You still have 95% - pretty good going after what you’ve been through.

No idea how that’ll come over, but I hope it helps in some small way.

If it is any consolation my memory is now much better than before - not AS good, but manageable. The tiredness is getting steadily less too. Give it a bit of time - I am 5 years on now.

Chris

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@chrisf That does help, I completely understand what you mean. When I was struggling in the year running up to surgery I looked a little into meditation, and some of the thinking from Buddhism etc. I didn’t delve too far but I found practising meditation to be really helpful, although I didn’t stick with it as I should. I think it is very powerful to try and change the way we think in order to find acceptance, and I don’t think it’s negative. It is hard though, and I often forget to look at things that way.

My fear during the year before surgery was almost all-consuming, and I found it almost impossible to control my emotions. Although there were things in my life that were objectively frustrating, I got so unreasonably angry and upset all the time at the smallest things. I felt like I was being crushed by my circumstances (both brain related and otherwise).

The most remarkable feeling I noticed after surgery however was the weight that was lifted from my shoulders. There was almost a big gap where all these feelings had been, and so I try to remind myself that however I might feel now, it’s nothing in comparison to before. The frustrations I have about my recovery are very small compared to the feelings I used to have. And I think you’re right, it’s worthwhile to remind myself also that this peace I have now probably isn’t forever. If it’s not my brain it will be something else, because life is like that isn’t it? But that’s okay.

If I’m right, what you’re saying is that life is a journey. There will always be good bits and bad bits, and we probably can’t change the bad bits but we can definitely try and appreciate the good while we have it?

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Thank you for sharing and it seems your heart is in the right place (I hope that doesn’t sound patronizing).

I am about 2 years post surgery/diagnosis and only just found this site (although I was aware of these forums in general and perhaps was avoiding it).

In any case, it’s good to hear your story and that you shared. Your experience will help other people

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