Long time viewer, first time post

Hello everyone, I have been a long time frequenter of this website and decided I would finally introduce myself and join in the community.
My name is Kevin! My friends call me Kev but my closest friends call me moccasin (this is because of an intense fear of snakes). Some info about myself before my story: I am a graduate student at FSU studying philosophy with a focus on biomedicine and applied ethics, I am a passionate fan of the Steelers, I love music and play guitar and sing (mostly metal and emo related genres), and I have a massive model train collection of mostly steam locomotives.
Now for my medical story: In January of 2022, I was working out when I suddenly felt a horrific headache and became disoriented. I thought I was going hypoglycemic (it was past noon and I had not had breakfast or even water to drink after being up for 5 hours). I walked back to my office on campus where I laid down on the couch and went unconscious. I woke up after an unknown amount of time and realized I was struggling to talk. This, of course, freaked me out and triggered a panic attack which caused me to hurry to the bathroom to throw up. As I left my office, I went unconscious again. My professor found me and I woke up to him standing over me calling an ambulance. This time, however, I felt totally fine. No more headache, disorientation, or nausea. The paramedics showed u and asked me what I wanted to do. We opted to go just to be safe because it seemed I was still stumbling over some words. They took me to a small hospital where they did a full work up which included a CT scan of my head. Thatā€™s when they found I had a bleed and rushed me to another hospital. Hereā€™s a fun part of the story; I naturally began having another panic attack at the sudden news and the nurses gave me a huge dosing of something which did more than calmed it. It knocked me out! I fell asleep before the transfer ambulance showed up and I woke up for a brief moment with my friend standing next to my bed in the ER and a doctor pleading with me to stay awake. I was so out from whatever drug they gave me, I couldnā€™t stay awake for more than a few seconds. The doctor tried giving me a neuroexam checking my eye movement and my ability to read sentences off of a paper. I obviously performed poorly and she assumed I was in extreme danger (I donā€™t think the other hospital told the new hospital I was sedated). I slept for about 15ish hours. I woke u finally and they told me I was going to have an angio done. Once it was done, a vascular surgeon came into my room in the neuro ICU, and informed me of my AVM. I was there for about a week before I was discharged to go home to my student apartment. After some consideration, I was too afraid to be alone most of the day and decided to go home with my mom in South Florida and receive treatment at Uni of Miami. Here, I met my wonderful, brilliant, and kind neurosurgeon. After an MRI and an FMRI, it was decided the only option was GK. 6 months on the dot after my bleed, I went in for my GK procedure in July. After 5 months, I have been okay. I am back to FSU working on my philosophical work and I have met the most amazing girl who I have been dating for about a month now. Unfortunately, I still have frequent headaches, I am often exhausted, and I have been much more open about my negative views about people. Waiting to see my doctor for the follow up MRI results. I know progress probably wonā€™t be noticeable at this point, but certainly hoping thereā€™s at least nothing more than a ā€œsee you in 6 monthsā€ from the doctor.
This is about all I have to say for now. I will conclude my first post here. I look forward to getting to know everyone here a little better! And a special hello to my fellow Florida members!! I am really hoping to hear from you guys as well! I have my notifications turned off for this website, so i may be slow to some responses here. But, I will certainly try to be responsive of course!!!
Best regards everyone, and happy holidays!

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Welcome! I had a gamma knife as well, 6 moths after my bleed. I had some head aches, swelling and "ice pick"headaches at about the 6 month mark post gamma. Slowly subsided and now I rarely have any head pain, I do have a wee bit of aphasia but that is from the bleed, a greatly improved! Good luck with the studies and research. Biomedicine and ethics, that is truly fascinating and the varied opinions should be tremendously interesting.

My wife has a PhD, works at a University but also does clinical practice as a Nurse Practitioner. We have clearly established ho the academic is in my house! Every operation requires brains and brawnā€¦I can carry things! Take Care, John.

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Welcome Kev! Hope you have a happy holiday as well.
I semi-recently (almost a year now I suppose) had gk and Iā€™ve been doing okay. Iā€™m also epileptic as a result of my avm bleed. If u click my profile I think u can probably see my story/posts more in detail but happy to have you here! Even if you donā€™t post anything, I feel exponentially better knowing that Iā€™m not alone and I can chop it up with people with such similar experiences. Learning new ways to deal with things and such is invaluable

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Kev,

I just want to say ā€œwelcomeā€ as well. @JD12 is your friend on the gamma knife front. It does seem usual for some side effects from the gamma knife to show themselves at the 6 month mark, so if you get unusual stuff going on, talk to your doc. It may not be indicative of anything really untoward but it is always best to get checked out.

I can completely relate to the feeling vulnerable when alone. My boss wanted me to work from home in the period between diagnosis and embolisation because my AVM was making me feel dizzy but I felt much, much safer in an office with other people than being locked away at home for 8 hours a day.

There are other strategies we can use as well.

Welcome!

Richard

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Kevin, welcome!

Working out dehydrated was also when my AVM bled. Hydration is a key factor to avoid clotting, which in turn can cause obstructions and bleeding.

Also like you I had GK a few months after my bleed (mine is grade 4, sounds like similar location to you, occipital / parietal - slightly larger hence the extra point). Itā€™s now 3.5 years post GK and Iā€™ve had no further problems, and feel very lucky sitting here in the winter sunshineā€¦.life is good.

In terms of your tiredness, and other symptoms you need to give yourself time to recover from the bleed. I had all sorts of symptoms, mainly brain fog and sensitivity to light/noise, but also emotional which could make me snappy. Also events like this can change your perspective which may account for your new found candour :joy::person_facepalming:t2:ā€¦.

As for the feeling of vulnerability it took me a while to take a train alone, I just felt that anything could happen and was pretty edgy for a good 12 months, but now I do everything just like before and have a positive expectation that nothing bad will happen. I just enjoy every day. Yes I sometimes get caught up in the silly stuff but I just have to remember those first days in ICU and it all gets back into perspective!

Finally, I felt quite unwell after GK for around 10-12 weeks. I wish someone had told me this could happen but my medical advice was that there was no real reason so feel rough. I was very fretful during this period but neednā€™t have worried as it all resolved. Looking back I think the whole previous few months were catching up with me and my body was writing the cheque. I feel 100% now.

Anyway, wishing you all the best on this weird journey we all share, and counting you (like me) as one of the lucky ones.
Best,
Jonny

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welcome @Kevphilosophy Glad you have a good team. Sometimes with brain stuff it is watch and wait which can be frustrating. I have a great team at Stanford. I have a length medical bracelet which I list my head neuro at Stanford and even say in capital letters TAKE TO STANFORD.
One of the nausea meds makes me sleep for 14-16 hrs and they can never wake me up at the hospital phenergan. I always warn them but they never believe me .
I am in the we cant do anything more and watch and wait -
This is a great group
Hugs
Angela

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Welcome to the family Kev and glad you have finally posted on here about your experienceā€¦ I definitely believe it is healthy to get it out there and get things off your mindā€¦ God bless!

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Howdy again everyone!
So sorry I am responding here to late! With the holidays, the doctor appointment, and the start of the semester I have been shockingly busy. I appreciate you all have taken the time to read my story and respond. It truly means a lot!
I should start with the big update. Had my follow up from my MRI. No changes. We expected this of course. Far too soon to see reduction. Though I knew this, it was still kind of saddening. Kind of have that hope out for a really good turn of events even though one probably shouldnā€™t in this case. However, no change also means nothing bad. Everything looked as it should. Appointment took minutes. Simply said ā€œsee you in another 6 months.ā€ So I am glad for that news!
This that appointment it has been a bit of a rollercoaster. This month was the 1 year mark from when my ā€œaccidentā€ happened. My beautiful girlfriend came by after our seminar and had dinner with me. I have been feeling exceptionally exhausted lately and am still having my headaches. i have the usual headaches across the forehead as well as the ice pick heads in the side of my head. Those are anxiety inducing. Hopefully they are nothing more than residual pain. Other than that, I am taking it day by day and remaining thankful for each day I am here.
I will take a moment to update everyone on my new research project. I decided I wanted to take some time away from my biomedical research and have chosen to make a mark on the topic of capital punishment. It is a topic I have had opinions on for years and decided I should finally make my contribution to that field. This paper is discussing capital punishment as a response to evil. Instead of making any argument about the morality of its use, this paper is arguing that it is permissible to use capital punishment on evil people AND people who commit evil actions. I am still in the middle of my research. I will update and share as that develops.
Thanks again everyone! Talk to you all soon!

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I have a similar note as you with my doctor. I, unfortunately, am 7 hours away from my neuro by car. Despite this, i have her office number listed on all of my medical records. Any time I pop into a hospital I either make it clear that if need be, the doctors should call her. Thankfully, we have not gotten there. So sorry you are in the watch and wait. I hope you are staying strong! Thank you for taking the time to read my story!
Best regards,
Kev.

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Jonny, thank you for the reply. In my time of lurking, I have read over many of your posts here and I thank you for them.
In many ways I am in the same situation as you. Same grade and similar location. After the bleed, I was also very sensitive to a lot of things including lights, sounds, smells. I was (and I still am) sensitive emotionally. I was suffering from severe anxiety and intense depression. With the thanks of determination and a good therapist, I have been on an upswing on those matters.
I am glad to hear you are feeling good now and it gives me encouragement and motivation. I am grateful for you having done that.
Thank you Jonny, hope to talk soon.
Best regards,
Kev.

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Thanks for the reply, John!
So far at the six month mark, still got headaches and exhaustion. It was mentioned with the doc but he saw nothing to indicate worry. I will persevere on. Thankfully my work is not physically demanding, though it is mentally demanding, so I do not have to expend too much energy when feeling drained. I also have some aphasia as well .Very minor. Occasionally leave words out or sometimes mixture beginnings of words up. Today I said ā€œsarking potā€ when pulling into a restaurant for lunch. A bit funny, though i admit sometimes slightly anxiety inducing.
What is your wifeā€™s PhD in? My girlfriend and I are in the same program though she is unsure she wants her PhD (I donā€™t blame her). Before this all happened, I was the brain and the brawn. Made me a great machinist. Now I resolve myself to just the brains!
Best regards,
Kev

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Hey Kev,
Capital punishment?? Iā€™d love for someone to go to the capitol and punish someone for their actions :laughing: , especially the evil ones.
OOPPSS, wrong ā€˜capitalā€™. :rofl: Maybe I was just dreaming. :laughing: :roll_eyes: :laughing:

Day by day is about the only to deal with neurosurgery. I had a craniotomy and even years later itā€™s still a day by day sort of thing. Some days, no problem, but then some days my symptoms overwhelm me. Iā€™ve tried to identify my triggers and avoid them, when possible, but short of hibernating in a dark, silent room itā€™s impossible to avoid them all. Personally, I think we learn to manage the best way we can. If thatā€™s with activity management, time management, medication management etc then thatā€™s what works for THAT person. One thing I have found on this journey is that this is not a ā€˜One-Size-Fits-Allā€™ sort of situation.

We all have to manage for ourselves, the best way we can.

Merl from the Modsupport Team

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My wifeā€™s Phd is in Nursing, she has a Masters in Education as well. She has a love of learning, and that has morphed into teaching but she does maintain clinical practice as a Nurse Practitioner to stay relevant. After our initial posts, I have had a seizure for the first time which has me in a bit of a spin. My wife and I flew to Hawaii yesterday(although flooding here!), a trip that had been planned for sometime. I was quite nervous which no one but me knew, but all went well.

I find the ā€œthinkingā€ stuff tires me out far more than the brain stuff, while a different type of tiring it can be exhausting. Stay strong! John.

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Hi Kev, Welcome and thanks for your amazing intro/history.
Youā€™re right that progress may not be noticeable. It probably wonā€™t be linear either.
So be patient with yourself. Best wishes, Greg

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I have been doing the same as for trying to keep track of my triggers and avoiding them. I unfortunately noticed one of the big triggers is when I start getting too excited. Specifically, when I get a little too boisterous with my friends. Itā€™s a shame. I am an extremely extroverted person and when I am with my friends, thereā€™s nothing I enjoy more than telling good jokes, talking loud, and laughing hard. I catch myself when I get going that I have to slow myself. Iā€™ve found on several occasions where I donā€™t catch myself, I get left with a substantial headache. This is probably the hardest trigger to keep track of. The other seems to be caffeine and sugar. That meant cutting out soda! Quite unfortunate as well since I love Coca Cola. But, I suppose it is terrible for my health in general so I suppose itā€™s good I have to quit that stuff.
You are right, it is day by day. My department is completely aware of what happened and they know that if one day Iā€™m just not active or involved, itā€™s because Iā€™m struggling for the day. The last couple of weeks have been tough. Anxiety has been high and the headaches have been pronounced. Making an appointment with a neurologist soon. Hopefully some relief might be found.
Thanks for the comment, Merl!
Best regards,
Kev

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Much like your wife, I love to learn and I have a passion for teaching (though Iā€™d never make it as a nurse). Very sorry to hear of the seizure! I hope you have been feeling better ever since. My muscles have become quite twitchy lately. I, of course, cannot tell if they are short lived seizures or if it is just the stress of the semester moving along and my poor sleep quality (hoping the latter). Hoping to see a neurologist and get to the bottom of that soon.
With the thinking stuff, I agree, it is extremely exhausting. I get home and I often just do not have the energy to just do anything. I used to work as a machinist and I thought office work would be so easy. Now after spending a day thinking about arguments, I realize I was wrong!
Take care, John!
Best regards,
Kev

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Thank you for the wishes, Greg.
Always appreciated!
Best regards,
Kev

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It took 3 years for me

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Hey Kev, how are things now? I hope you are feeling settled and relaxed. I find that I can go for weeks now without thinking about my AVM, and then some days I feel frightened, usually when I get an ice pick pain out of the blueā€¦.wtf causes that anyway!? I think itā€™s psychological but who knowsā€¦Anyway, for the most part I am lucky to not have any real anxiety, but I have my next follow up in November and am starting to think about it. It will be 4.5 years post GK. My last review was at 2.5 years which showed no change but a ā€˜good reactionā€™. So I hope / expect to see some progress but also expect to need a further treatment. Iā€™ve been enjoying living in the eye of the storm without needing to make any decisions so Iā€™m sure Iā€™ll be a little nervous come November. You guys in the US seem to have much more regular monitoring than here in the U.K. every six months? Mine is every two years. I guess that no news is good news!
Hope you are well,
Jonny

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Jonny, good to hear from you. I appreciate you swinging back by to check in on me.
I am more settled and relaxed. Similar to you, I go a period of time not thinking about the AVM and then there are the times when it creeps back into my conscious thought. And same as you, the memories come back after an ice pick headache. Iā€™ve read a considerable amount of literature on them the last year. The beauty of being a part of an academic institution is having free access to all the research I could ever want or need to consume. There is no definitive way to understand what is causing them or even how to prevent them (currently). Usually, the recommendation is to track habits that make them worse. I found high anxiety makes them come around more often as well as not getting enough sleep. Getting too active will also stir them up it seems. Soda is another thing that seems to bring them around for me, so i try to avoid soda as much as possible. Though an occasional can of coca cola seems to be fine for me. In Tallahassee, we have been having frequent weather shifts. One week it is in the 50ā€™s then suddenly weā€™re back in the sweltering high 80ā€™s. A lot of rain storms as well. These weather changes cause headaches in me. Iā€™ve also gotten smart recently and noticed the fluorescent lights in my departmentā€™s building were triggering headaches. I bought a set of glare protection glasses that are a red haze color for migraines. They have worked great! Iā€™ve been much happier and am able to be active in discussions agains.
Yes, here in the US we get follow ups more frequently. At the moment, I am at every six months. So I will have another check up at the end of May. Much like you, it is on my mind. I work extra hard to not think about it and try to reassure myself it is more likely I will be okay. Hoping to see some reaction on this next visit with some positive news. I have seen some say they get a scan once a year. I believe this is once there is notable progress and once obliteration is achieved.
I will, of course, be hoping for positive news for you as well in November! Keep up the good fight!
Kev.

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