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IamA 19 year old student who suffered a spontaneous bleeding in my brain half a year ago. AMA!
Hey guys! I have seen more and more threads on brain injury nowadays on reddit and people are interested in this topic. Since I am recovering at home right now and is quite bored, so I decide to do an AMA to answer people's question regarding brain injury from my experience.
What happened: I had a spontaneous bleeding in my abnormal blood vessel in the brain,AVM. The bleed happened in my Basal Ganglia. My surgeon removed the blood clot to save my life 6 hours after the bleed and removed the right skull so my brain could swell due to the operation. Because of the bleed, it led to a major stroke and thought that I would be paralysed rest of my life. However I am lucky that because of my young age I could recover most of my mobility back but is limited by Spasticity. I have left side weakness but luckily I am a right hander ( I'm all right now! * wink*)
How it happened: I am a 19 year old student from Singapore, and was on my second last day of internship on 29 January 2014. I was presenting halfway when I suddenly felt very drunk, along with noticeable drooping on my left face. I could not move my left hand nor stand up anymore and collapsed onto the chair. I drank a sip of water which I immediately spat out involuntarily. At that point of time, I knew that man, I'm having a stroke. I immediately messaged my girlfriend " I love you. Tell my mom and dad I'm Sorry." and I lost my consciousnesses.(technically I didn't as I just lost the memories from this point onwards till before surgery as my family told me I was completely awake and screaming in pain in A&E.)
From this point onwards, they are very blurry as my brain could not process clearly:
Next thing I woke up, I had many tubes in my body and I saw my girlfriend and family. They told me I had a Stroke and I should rest more from now on. Then I fell asleep.
Fast-forward to today
I had done a cranioplasty to put an artificial skull back. I also stayed in rehabilitation hospital for 2 months. I am able to walk at home without any walking aid and could shower alone. I have regained mobility on my upper limb as well, but could not open up my fingers due to spasticity.
Future treatment: I am going for Radio Surgery to obliterate my abnormal blood vessel to prevent future bleeding. I am also going for regular outpatient therapy to regain functionality.
tl;dr: Had a spontaneous bleed in brain which caused major stroke. Right skull removed, then artifical skull implanted. Able to walk at home independently but lost functionality like a healthy person.
pic: Imgur (before) right: right skull removed (after) left: after artificial skull implant.
Any questions? AMA!
StrokeOfLife7 karma
Yes!! There was not any sign nor symptom for bleeding beforehand. But AVM does cause seizures to some patients and actions could be taken to it before it bleed. I'm just unlucky that I did not have any seizures but suddenly bleed which then doctors found that I have AVM.
jayex5 karma
Hey man, singaporean here. Hope you're recovering well! What are your current plans for the time being?
StrokeOfLife7 karma
Hey fellow Singaporean! My plan is to rest at home and try to recover as much as possible. If I am able to recover much more functionality and my radiosurgery comes out successfully ( will last for 2 years ), I will continue my studies in university as I have graduated with a diploma. If I don't fully recover by 2-3 years, I will try to find a job and marry my girlfriend once we are financially stable.
StrokeOfLife8 karma
Hey! Thank you so much for your well wishes. Yea, my loved ones were so worried and they cried outside the operation theatre from 12am to 7am while I was inside.
Well, I grew mature much more from this incident. Know how to handle critical situations and emotions of others and myself. I also pay a lot more attentions to my friends and family from now on.
StrobiWan3 karma
In the States, we have support groups for stroke survivor and their families. Anything like that in Singapore? Sounds like you're adjusting well but it can also be helpful for your family (TBI survivor here).
StrokeOfLife5 karma
Hey! Yup there is stroke club in Singapore. But I'm planning to set up youth stroke group in a year or two to encourage other young patients.
DoNotScratchYourEyes3 karma
When you realised you were having a stoke was there anything you regretted not having done in your life and have you made any progress towards doing it now you're getting better?
StrokeOfLife3 karma
I kind of regret nothing! Didn't think much as the situation was very messy and unreal
autumnx3 karma
I just went to the ER for a nose bleed that lasted over an hour and could not get it to stop. I was choking on it and nearly fainted. I couldn't remember anyone that helped me in the hospital. Not like a brain bleed in the least but I think I understand the drunk feeling as everything was draining from my face.
Do you have to do anything to prepare for Radio Surgery and what will recovery be like?
StrokeOfLife2 karma
Hey, I'm sorry to hear that. Hope you are doing alright! For radiosurgery, there's nothing to prepare much, but TBH I am so worried about it due to risk of brain damage. Recovery for that depends on the result of it.
autumnx2 karma
Thanks!
Have they discussed your risks and long term effects? I'm sure the benefits outweigh the risks or they wouldn't do it.
StrokeOfLife2 karma
Yup. I have 3% chance to bleed every year if i don't go for radiosurgery. But radiosurgery has 70% chance of success and I will not bleed in the future. But risk is 5% chance of brain damage.
Reputed2 karma
Does it feel like your brain is processing anything differently? Difficulty with long/short term memory, forget what you are doing/saying, or cognitive function?
StrokeOfLife7 karma
Initially I had trouble with short term memory. After months of memory training, I can say that remembering difficult details in short term is much better compared to times before stroke as I had learn the techniques of remembering stuffs. I had no problem with any cognitive functions other than that.
StrokeOfLife3 karma
I was thinking "crap. Is this stroke? I dont want to die this young. What is going on? Why me? Better message my girlfriend first" I did not message my parents because they are not very tech savvy. So first person in mind is to text my girlfriend who will check her phone.
mill18242 karma
What happened with your internship? Did you still get credit? Hey, maybe you'll be remembered by your colleagues and one day during and interview they'll say "Wow, you've recovered this well and are back at doing what you love?!?!? Your hired!!"
Best of luck, man.
StrokeOfLife5 karma
I got distinction at the end of it. I have also graduated with a merit diploma ( 2nd in the course) Thank you for your encouragement!
netspawn2 karma
My cousin had a similar bleed about 25 years ago and it was hard work but she fully recovered with all her faculties. With today's advancements you should do well.
I must admit, know very little about Singapore. Do you have socialized medicine and are you easily able to get the care and therapy you need?
StrokeOfLife3 karma
Hey! I'm glad that your cousin is doing so well now. We do have organisations who provide financial assistance, family counselling and therapy sessions.
netspawn2 karma
Glad to hear you are getting the support you need. Get well and I encourage you take the opportunity during your recovery to be as much of a dick as possible because you have a ready made excuse!:) Such an opportunity is not likely to happen again.
StrokeOfLife3 karma
I wish! I wish I have telekinesis so that I can carry stuffs on behalf of my left hand.
StarDestinyGuy2 karma
My god, that can just happen like that? Now I'm terrified of this happening to me.
What are the chances of this kind of thing happening?
StarDestinyGuy2 karma
Well, I'm sorry you were so unlucky then.
It's very admirable that your spirits seem to be so high after that. Also that you're responding to every person here with kindness.
StrokeOfLife3 karma
Hey! Thank you for acknowledging that! I'm answering everyone as I too prefer to see an AMA where the op answer everyone if he/she is able to.
XxEpicTacosxX1 karma
Do you follow GabeN?
And I'm sorry that happened, hope you're doing ok.
StrokeOfLife2 karma
I will continue on my degree education as soon as my blood vessel is fully blocked off by radio surgery. Stress can make them bleed again.
pw08031 karma
What was it like to be aware that you were having a stroke? What was going through your mind? - I wish you a speedy recovery!
StrokeOfLife1 karma
Hey! I was very scared when I realized I was having a stroke. It was very unreal for me. Thanks!
Fearphilosophy1 karma
Hey man. I hope you're doing well. I'm sorry if this is blunt or makes you uncomfortable, but I'm always one to ask the hard questions.
How do you feel?
Not physically, but emotionally. Its been awhile now and you're in recovery, but are you afraid? Happy? Sad? (hopes/fears)
What's going on in your head(sorry) right now with everything?
Again wish you the best of luck with everything, and a speedy recovery.
StrokeOfLife2 karma
Hey! These are not blunt but very good questions! ! I'm very worried. 1. Will I survive to marry my girlfriend? 2. Will I ever support my parents? 3. How will I get a job in the future? These are the questions I always ask myself and was sadden by it. I have lost my appetite a lot and I rarely had good sleep these few weeks. These only began after knowing I'm suppose to go for radiosurgery soon.
Fearphilosophy2 karma
Keep pushing through man. I hope your parents/girlfriend/friends are a good support to you.
And if anything, at least know one guy from the internet is rooting for you!
Greek191 karma
Do you have good reaction time? Have you gotten worse at any games such as counter strike or call of duty?
StrokeOfLife1 karma
Well, I got worse in dota 2 as I have to click on the skill manually with mouse. For FPS wise its difficult as I cannot use my left hand anymore.
Greek191 karma
Well on the positive side you still have dota :) Will the radio thingy permit you to use your left hand? Can you move your left arm?
StrokeOfLife1 karma
Radiosurgery is to block off the blood vessel. It will not help on my mobility sadly. Yup I can move my upper arm and elbow! But I can't control my fingers unfortunately. I still experience mild numbness from the palm to fingers.
Greek191 karma
Look up "Michael handi Olsen. He's a counter strike player that plays with no hands. I'm sure you could the kind of hardware he uses for your left arm.
Here's his twitch http://www.twitch.tv/therealhandi
Greek191 karma
Also you might want to look into mouses with buttons like the Logitech g700 or some razer mouses. You could bind dota skills into the mouse buttons so you wouldn't have to use a lot of time to click them.
StrokeOfLife1 karma
Yup! I am using a gaming mouse gifted by my girlfriend as my birthday present last year. However it only has 2 macro buttons. Not intending to spend any money for my entertainment. I would like to save my money to pay my medical bills and tuition fee loan.
Greek191 karma
That's completely understandable. I hope you heal and end up the way you were before the stroke.
Greek191 karma
Is there any possible chance of using your left hand? Would you amputate the bottom half of the arm or would you keep it there for emotional/sentimental reasons (which I completely understand) if you can't use your left hand?
StrokeOfLife1 karma
Amputation is way out of the question as I will regain the functionality of my fingers eventually in the future. Recovery from stroke take years.
StrokeOfLife1 karma
Yup!! Thank you so much. I look forward yo rrgain the functionality. It will take time and a lot of hard work.
ClarityEye1 karma
Wow.. so you were in the middle of doing a presentation when it happened? I guess you were quite fortunate to be around other people at that time do they could call the ambulance!
StrokeOfLife2 karma
Yup! It was very lucky for me. Because I was suppose to be on a cruise next day. Just imagine I collapsed in the middle of the sea and I have to be send to the hospital tgrough taking a rescue helicopter.
dogsandpeaceohmy1 karma
My husband had an AVM. He presented with a seizure and then had 3 embolizations. The third caused a bleed and a 22 hour surgery. 2 years later he is back to his old job.
Have you had cognitive difficulties? My husband has hemianopsia (legally blind) and his memory is not very good. How have you managed with those difficulties?
StrokeOfLife1 karma
I'm sorry to hear that about your husband. I'm lucky that I only suffered poor short term memory. But after a month of memory training, I can say that my memory is much better than pre-stroke.
dogsandpeaceohmy1 karma
He went through major rehab and it helped a great deal. He had to relearn everything but as you know, the brain is amazing! Stay strong!! You can do this!
StrokeOfLife1 karma
Thanks! Yup brain is absolutely amazing. They relearn and rewire themselves without us realizing what's going on
StrokeOfLife1 karma
Haha, nope I don't follow soccer games. But I do know the results and it was shocking!
Genrok1 karma
Yeah it really was. Kind of disappointed that Brazil went out in that style to a home crowd in the most expensive World Cup ever with the largest semi-final defeat ever.
edit: David Luis thought he was a striker for half the game and the other half he didn't realise that defenders have to defend. He's passionate about football, so you really can't hate him.. but what a shit performance.
Also, hope you're recovering well.
StrokeOfLife1 karma
Well. Funny thing is I actually support Germany since young as I really love their flag!
Genrok1 karma
NO ! NO! NO NO ! NO! As someone from England this is treasonous talk! However, yeah, Germany are pretty damn good.
StrokeOfLife2 karma
I don't follow soccer though. But yea 7-1 proves they are playing out of their mind! No pun intended from this AMA lol
StrokeOfLife3 karma
Yes, definitely. I know who is good to me or who is bad. I also changed my view in life: " live in your plan" as I have lots of plans before this. But did not live my life fully as I was too focused in achieving the goals in my plan. Edit: grammar
CurbedEnthusiasm1 karma
Thanks, I can imagine it does make you get the most of each day. Good luck to you.
purpleberrizz0 karma
Thank you for posting this AMA! How has the stroke effected you every day life? I hope that you have a swift recovery!
StrokeOfLife3 karma
Hey you are welcome! TBH stroke has affected my emotions initially but I have come to accept it after so many months. I have been using my right hand only on everything. It is utmost important to adapt to using your strong side to continue your daily living and protect your weak side. Thank you for you well wishes!
vensamape0 karma
How are you going to explain the lop-sidedness of your head? Are you going to give the full story? Or are you going to make it up just so you don't have to keep repeating that dreadful nightmare? Best of luck, man!
StrokeOfLife3 karma
I'm pretty open about it. Besides, I always wear a beanie when I'm outside my house to protect my surgical wound from dirts.
StrokeOfLife1 karma
Hi! Sure I will, but im going to have my dinner first. I will try to find my inpatient summary and post it later
Divolinon9 karma
So these things can just start to bleed for no reason whatsoever? That is fucking scary!
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