Coping strategies/advice? Do you/how do you prepare for worst case?

I am a 28 year old female who is a semi-professional footballer. Approx 18 months ago I got knocked out during a game. I struggled with headaches for a long time due to this, and my physio pushed me into getting a scan just to make sure it wasn’t anything too serious… I was cleared from the knockout, but they found something else… a right frontal AVM in the brain. I have been told that they are pretty confident that it will bleed in my lifetime although they cant give me a time frame. Due to the placement, they have said that the left side of my body will be paralyzed when this happens (best case scenario). The placement is in a dangerous place, so surgery and embolization are not options for me. I have had my angiogram 3 weeks ago, and am waiting to find out if I can have gamma knife. I’m not sure what happens if I can’t - and even if I can, I know it takes time and that I just have to hope it doesn’t bleed before working… if I’m even able to have gamma knife. It’s been a pretty mad time, and I am so lucky I got knocked out in that football game… but the truth is - I’m not really sure how to deal/process this.

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Well good news they found it before it ruptured. :+1:It is stressful knowing that you have a AVM that could possibly rupture at some time in your life. I didn’t no I had my AVM until it ruptured. I was 10 years old when it happened. Was paralyzed on my right side but after 2 months of therapy was looking better and able to move my right side again but still had therapy for a year. As for my surgeries had 4. Had what’s called brain craniotomy. Was in great physical health a year after surgery. Was even back in sports 6 months later. Ran the 800 meter in track, baseball, and golf.

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Hey Ashleigh,
I know what you feel and I can tell you what I did to keep my sanity ;).

When I got my Diagnosis (from a Radiologist) I was initially oblivious to the danger of an AVM and thus not extremely concerned (Since it was not her Job to tell me exactly the danger of an AVM). After a while I became a bit nervous and started googling and became more and more concerned. But over the ~4 months I had to research about the topic, I dug deeper and deeper into AVM Studys and Neurology in general.
I am the type of guy that wants to know what I get myself into and I prefer to enter these kinds of oddysees prepared. And knowing your enemy can initially become scary, but with time it becomes more calming, once you have a solid idea of your own illness. I don’t know if that appeals to you, but If you are that type of person I can only recommend you to research about AVMs. (Especially since AvMs are very complex lesions)
(Articles form hospitals are a good breakdown and Papers [that can be accessed with sci-hub] are very in-depth and interesting]
And if you are interested, I can have you covered with sources :wink:

Additionally (and this might seem a bit darker)
I have thought about death and the implications of it extensively and I found my peace with it (while being atheist).
It can become a bit complicated and also don’t want to make you more sad, but if you want to know about it I would be happy to share my way of dealing with it, with you.

It’s the advice of a pragmatist but I hope that my first recommendation can help you at least a little bit. And: don’t panic, modern medicine is amazing and your procedure will go just as planned. Wish you all the best!

Marcel :slight_smile:

Ps: if you come across a Study called “ARUBA”, take it with a grain of salt, because it is very ‘controversial’ in neuroscience and many call it misleading.

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And to add to my reply: the fact that your AVM was caught by accident is a good sign. Of course not without risks as your doctor’s told you (I also fortunately had no rupture but I did have novel symptoms, indicating agressive progression)
And while it can’t be a certain security that you will be fine, It may very well be a sign that a rupture would in theory take its time. All I want to say is, that you should not worry all too much about rupture ahead of treatment. :slight_smile:

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Hi John, thanks for replying!
WOW 10 years old!!! I am so sorry that happened to you but that is so amazing you were able to overcome it and get back into sports. That is actually great to hear - I know every case is different, but it is awesome to know that you were able to get use again after paralysis.
How are you doing now?

Hey Zenheizer, thank you for replying!

I think I am pretty similar to you in the sense that I have done a lot of research and like to know as much as possible - a lot of articles, studies etc… glad I found this forum now so I could get perspective on the emotional side of things to go along with the science that I have been looking into.
It’s weird but, although dark, dying is something I have thought about a lot (I too am an atheist) - because I have to consider that may happen. I’m sort of at peace with that if it were to happen but I think its parts other than that I struggle more with. I’m an athlete, so the thought of losing the use of limbs is insane to me - I find it hard to even comprehend the life changes (especially every day things) that would happen. Knowing about this chance before it has ruptured is great, but also strange… I keep thinking I have a chance to prepare as best as I can, but also realize there are so many unknowns that I have no idea where I would even start.
I see your other message about trying not to worry about rupture before treatment - I agree, hard though haha.
Sorry, I know this stuff is dark, but to be honest - it’s the darker stuff I am struggling more with.

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Wow!

Fortunately/unfortunately mine ruptured, but I managed to walk away without deficits - sorta speak

Religious beliefs in my opinion aren’t as important as some make it out to be. Both of you mentioned the same thing - to find peace. Unfortunately, yes - it’s as dark as it gets - no matter how religious or not one of us is or isn’t.

Throughout this whole “brain thing” is where I found god - which was after coming to terms & peace of my situation. . . Again, your beliefs vs. mine make no difference. I had that same beliefs as both of you for 39 years - I’m 40 now, surely didn’t think I’d see the big 4o

On the medical side of things - it’s definitely a good thing that yours was found early before a rupture occurred. No one, including all of my neuros ever had an answer to how did I exactly pull through this without serious deficits. Along with the fact that this wasn’t my first hemorrhage.

Get yourself into the best possible care. The neurosurgeons are what makes the difference. After going through what I went through & learning so much about this - best possible hands to be in is #1.

I’d add in my usual “god bless” - but, both of you definitely get the point. I’m no religion pusher by any means whatsoever.

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Hey Ashleigh, :slight_smile:
Yeah the question of what is going to happen/not work after operation is a big one. I had the fortune in my case, that mine was in the cerebellum (a non eloquent area) so long term disability is usually less on an issue. The mortality is higher, but since it did not rupture, it only made the intervention more sensible. However the symptoms that I experienced regarding my hearing loss on my right made me wonder if I could loose my right ear after procedure. Doctors told be that that would be highly unlikely (and usually that is not a wrong assumption)
But I could not rest and enjoyed my right ear as good as I could before surgury. And overall I started to get an “whatever happens, it will be fine” attitude which helped me a lot.
To the surprise of the doctors, the procedure eliminated a vessel supplying my right ear and I had strong hearing loss and nystagmus because of it. But the moment that I was told, that It could have been much worse, I could not complain anymore. At the end of the day, all things that I have left are more than enough and even better, I can regenerate much of what has been lost since I am young (as you are)
I always perseved brain damage as something almost permanent, but I was surprised how fast and well my body is able to adapt and regenerate. I could walk after 5 days (like a drunk man lol) and now I can hear music almost without noticing a difference, since my brain adapted to the imbalance.
What I am trying to say is that you have many things on your side, and you should not be scared of the recovery that might lie ahead as your age can accelerate your comeback to maybe a year or even just months. Don’t worry you have a long life left to live!
Take it as an update to your expiration date and a possibility to improve on yourself as a whole. For example: I took the Rehab as an opportunity to gain muscle mass and stamina (since regular fitness is not available in Germany because of Covid)
And form what I can tell, you are a fighter, so whatever might happen, you will fight through it (and recovery is often not as hard as it sounds, you just need perceverence and patience)
You might look back a couple of years after the procedure and be surprised how far you have come, trust me

Marcel :slight_smile:

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Hello Ashleigh, Important thing to remember is that we have carried these avms in our heads since birth and some of us have fortunately not suffered a bleed. I am now 47 and was diagnosed at age 13. The biggest disappointment for me at the time was that I could no longer play American football. I was fortunate to have World-renowned pediatric neurosurgeon in Dallas, TX when I was diagnosed in 1987 after a seizure. I distinctly remember Dr. Bruce coming into my hospital after my angiogram saying, “Well the good thing is we don’t have to shave your head!” lol My avm was far too large for any intervention 30+ years ago. My seizures were controlled by medication and continued in sports through HS (basketball and baseball) went off to college and have had a relatively ‘normal’ life until I required treatment at age 35. Most importantly, know that an avm is NOT a death sentence. I worked with an orthopaedic surgeon several years ago that lived well into his late seventies before his AVM was diagnosed! Mike hit the nail on the head with finding the best TEAM of neurosurgeons if treatment is an option. If you or I were to have a rupture, treatment is a life saving MUST. Do your best to continue researching options but find the right TEAM of neurosurgeons to trust your brain with. Not all avms are ticking time-bombs as I’ve seen many times and even heard from my own pediatric neurologist over 30 years ago! Sorry so long winded! Welcome to the site! Ask anything, but take it all with a grain of salt. It’s not all doom and gloom here. Best, GK

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Hi Mike, thanks for replying!

Wow that is awesome and amazing news you had no lasting serious deficits!
Thanks, I agree - I think I have gotten lucky… I was referred to and now am a patient at the National Hospital of Neurology & Neurosurgery London - apparently it’s the very best we have here… so I am for sure in good hands.

Thanks, I appreciate it. Take care :slight_smile:

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Thanks Marcel, I really appreciate you sharing with me - especially how you felt about things. I will for sure try and take that on board… and it’s so awesome that you are so well again!

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Hey Greg, thanks for the reply!

Aww man it sucks that you had to stop American football, but great that you could still play other sports at least. It’s crazy how far medicine and research have come to at least have treatment options now. I hear you about finding the right team - I have gotten lucky and am now a patient at the National Hospital of Neurology and Neurosurgery London, so I am thankfully in good hands! … I hope to hear sometime next week if I am able to have Gamma knife or not. I think i’m most nervous/anxious about the unknown.

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Well physically still great but there’s a few things that can never be fully restored from my bleed. A few funny ones are that I can wiggle my left toes but can’t do a thing with my right toes. It’s not that big of a deal but it’s weird. My biggest struggle is my right peripheral vision in both eyes is down. I didn’t really notice it at first but when out of the hospital and back home could tell it was different. So say I’m at the movies. I always have to get on the right side so I can see the screen fully. The other thing is driving. I only drive in say well none places. So say if I’m driving in the small towns it’s no problem but if in the big city where there’s 8 lanes it’s uncomfortable. If I’m just driving through I can do it but driving in the city is a pain. Usually have a wingman with me if in the city. There my extra right eye. :eye:

Haha yeah the toe wiggling is odd! Sucks about the eyesight - that must be frustrating?!

My heart goes out to you as you begin this journey but so glad they found it. My AVM is spinal so my treatments and symptoms are different. I agree with the other replies, make sure you go to a facility and surgeon that deal the most with AVM. I was fortunate enough to live near one in Phoenix. I found a therapist immediately who I talk with weekly. It has helped immensely to discuss my fears, my feelings and many times to help me gather the courage to continue to do my daily 5 hour routine of exercises. But as many have said to also come to peace with best case, worst case and all that may occur inbetween. It is so interesting to hear the age differences among our select club - I was 69 when mine was discovered during covid lockdown and since turned 70 -obviously much older than most. I agree with the others who urge you to do as much research as you can so you can ask questions as you move on. I wish you the best possible outcome with this hard to understand condition. At the end of the day I’ve learned there are very few answers. virtual hugs

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Thanks for replying Nancym! I hear you, I’ll for sure do my research, and know I am lucky/fortunate with the team I have :slight_smile: Wow, 5 hours is a lot! Do you feel they are helping? Was you lucky enough to find it before a rupture?

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My spinal cord basically had a stroke – that is every nerve and muscle in my body atrophied. This had already started by the time I reached the brain/spine clinic and increased every day until surgery. Post surgery I had 8 pounds of spinal fluid in my body that needed to work itself out. I started OT therapy one week after surgery and PT six weeks after when incision was healed. I am seeing progress but like all of us, more slowly than I would like. I’ll be sending positive thoughts your way. I urge you to reach out to family and friends – this is a journey you will need help. Most importantly, remember you are NOT alone. I have found everyone on this site to be compassionate, willing to share their experiences and advice on what has helped.

I also watched a couple of seminars from neurosurgeons dealing with AVM’s which I found helpful.

Best regards

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Hi John,

That is so sad and unbelievable thing for a 10 year old to have to go through, I am thrilled that the long journey worked for you.
If you don’t mind my asking how old are you now?

Ruby

When I was 36, I started having headaches and fatigue. It evolved into not being able to keep food down. That’s when I found mine. A CVM. Basically the same structural weakness but on the low pressure return side. It oozes instead of bursting. Mine was in my brain stem. I can still remember that time period. I visualize it as a set of hurdles. Taking each one at a time and a lot of adjusting after you get past one and start dealing with the next. I’m still the same person I was before I ever knew something was wrong. I’m just in completely different circumstances. If I could go back and tell myself anything, it would be have confidence. Not every decision I made worked out to be the best, but I couldn’t have possibly known and any worrying was wasted time. I’m still here. I’m still me. I’m still facing hurdles. So that means, I’m still one of the lucky ones.

So, I had gamma knife in 2018. 2 rounds of focused radiation on my left thalamus region of the brain. My advice… take one day at a time. I am seeing a psychotherapist, a psychiatrist (for insomnia and fear), and an occupational/physical therapist weekly. It helps occupy my time. I also write. Working on a non fiction story right now actually. The entire right side of my body is about 80% numb. I look fine. However, I have a hard time explaining what’s going on to people when they ask “what’s wrong with you?” So, I turned to drugs and/or alcohol to numb myself even more after radio surgery. Since having to take a medical leave of absence, then my dependence only became worse. Still struggle with it quite often. There are good days and there are bad days. Don’t let a simple turn of unfortunate events define your life. I recommend talking to a therapist. I didn’t think I had needed one but it honestly helps me cope.