Arteriovenous Malformation (AVM)
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- Опубликовано: 13 окт 2024
- For more information on Arteriovenous Malformation (AVM), please visit, cle.clinic/2pb...
Cleveland Clinic Neurosurgeon, Mark Bain, MD, describes arteriovenous malformation (AVM) symptoms and treatment options.
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My four week old daughter is survivor of a brain AVM. Making me the proudest father in the world and especially thankful for Great Ormond Street Hospital.
Bless her soul :)
This brings me to tears that your daughter had to go through that at that age. Considering i thought i was young when i was 20 going through it. I am so happy for you and your family, have a wonderful holiday❤
@@hunter65443how did you get on if don’t mind me asking.. as I currently about to have gamma knife
I sit here present day an A.V.M. survivor.-two days after Christmas in 2004, I heard the vessel in my skull rupture.-it sounded identical to when the filament in a light bulb pops.-It was followed by a loud flat line tone ringing sensation in my ears. Dr.James Holssapple neurosurgeon extroidinaire did my surgery for me. He presently works out of Baltimore, respectively. Thank You University Hospital in Syracuse,NY for facilitating the surgery & residency of the doctor.
Sorry what? Was it bad? I have 2 avm in My skull and everyone's been telling me to chill? I'm.25 please respond. I'm.glad your daughter is okay
i was too late for an intervention the aneurism exploded 12 years ago at51 had a very good neuro surgery i am still here and living to the max and take live full💪💪👍
So happy for you
Thanks for sharing. A loved one had emergency and I'm here to learn about it
8 I'm from india and suffering from avm ... please suggest me best treatment for avm.....is ethnol embolization worked??
This is my fear.
I’m sorry you experienced that but, I am happy that you made it out and are still thriving in life .
God bless everyone in these comments. I had one just a year ago and now I am strong and healthier than I was before. The universe kept us for a reason.
Are you feeling good so far?
Did you get surgery
At 39 mine ruptured while getting dressed for work. I knew something was wrong but being me, I thought it was just a super bad headache. Then the nausea and back and neck pain from the bleed. Went to the ER, and stayed hospitalized for a week. Had Gamma Knife 12/5/19, so far so good. First MRI to check it is in 2 months. I'm thankful to God I'm still here! I have felt that my memory isn't as it was but no other problems. Praying for them to say I'm healed sooner than they expect!!
Did the doctors say that you'd likely have any change to your lifespan as a result of the hemorrhage?
Thanks for sharing. Hope you are doing much better now!
I also feel like my memory isn't what it was
This is exactly my experience with AVM
@@soheilaabbaszadeh7286I was always suffered with headaches just thought it was down to lack off water as always done sports then in 2019 I started having bad anxiety and now n then hallucinations would come now then and then In January 2022 I had a seizure then found out I had a large AVM , which will be treaded with gamma knife
I had a right temporal AVM burst when I was 17. The splitting pain was immediate and I was vomiting from exposure to bright light. I had ~12hrs neurosurgery. Took me a few months to recover and I developed nocturnal epilepsy about 4 years later that’s reasonably well controlled. I work in a senior position in IT and am a bit of a workaholic, so balance is needed. You’d think at age 59 I’d have learned.🙂
Please contact with me my younger sister facing same problems in Pakistan
Same thing happened to be but I was 11 when it happened. 40 now
i did not feel anything just a sharp popping sound and my arm falling still phoned 911
@@M64v go to aga khan hospital karachi
bless you, my brother...
One of the nicest girls I’ve ever met passed away from this when it developed into an aneurism. Only 27. Absolutely heartbroken.
I had exactly that, surgery went well and they succeeded to glue it closed. I still have AVM but its not gonna be treated.
Had one of these myself on 2008. Very lucky to survive. Gamma knife surgery was my treatment.
I had the same treatment as you but I had a bleed in the brain how do you feel after having this treatment?
@@psingh4720 long time ago so memories of it are hazy. It was a pain free procedure to be honest. I had a steel helmet screwed to my skull with bolts but my head was numbed at the points so didn't feel it. I guess I felt relieved after it, but I k ow that's not the answer you want. I know a lot of tablets were involved to help with swelling and headaches after. The treatment worked as planned and I'm thankful for that. Peace ✌️
@@mattsmith6268 thanks for sharing your story buddy✌
We are here for a reason brother.
@@miguelfranco7796 amen!
My mother was around 54 in 1993 when she had intracranial bleeding and was rushed to the hospital. She had complained of headaches and the local clinic told her it was migraines, prescribed phenobarbital and sent her home. She ended up fainting and having a seizure. She had that surgery that is shown in this video. My mother was hospitalized for two months and upon discharge had no means to receive physical or speech therapy, but by the grace of God she recovered! She had some instances where she would have short term memory loss, for example, she would take a bus to go to look for a job and end up lost not knowing where she was heading to or how to get back home. She says she would cry of desperation. She ended up fully recovered, but then in 2007 she had another intracranial bleeding, but this one the doctors said was not one that doctors could or would do surgery on. She was in the hospital for a couple of days and then was discharged with no major problems and went back to work. She was 66 at the time. Then recently in July of 2019, nine months after she had retired at the age of 78, she had another intracranial bleeding and was hospitalized for eleven days, also no surgery to fix the problem, just hospitalized for observation. She was in pain, her head hurt, she was alert but not coherent. She could not walk. She was in a nursing home for therapy for about 21 days -they wanted to keep her so they kept giving her laxatives so she could soil herself and they could say she was unable to be in independent living, they were scammers, Ebony Lake Nursing Home in Brownsville Texas - anyway, my mom is now completely independent, she can care for herself, cook, clean, she lives on her own, of course I check on her everyday and I am in charge of taking her grocery shopping and to the doctor's office and getting her medication, but only bc she never learned how to drive. I think that my mother could be a great case study for AVM research. She is now 79 years old, she can walk, speak, and has better memory than me sometimes! The only thing that was affected is her hearing, but she can hear, just not put the words together to make sense. I was 13 when she had her first intracranial bleeding due to AVM and I am 41 now and just now learning exactly how and why this happened to her. She often asks me why this happened to her and now thanks to your video I can show her why. Very good video.
Hi sir my mom is now 47 and she recently got bleed this is her second bleed first was in 2017,have the problem of avm can i get your number can we talk sir..
Hello sir your mother still have avm in her head..
Hi, please contact with me my younger sister facing same problems in Pakistan. Please
God bless you and your mom!!!
God bless your mother I'm glad she's doing OK I sufferer a brain Aneurysm this February had 2 surgeries thank God I'm doing better I'm 49
I had this done 3 years ago today in the magnificent Walton hospital, Liverpool. God saved my life and since then, I’ve completed an MBA, am back to playing football, cycling and running, and I run a successful business. Don’t despair, be grateful for every day and pray for good health.
Mind me asking what you had done , I’m having gamma knife currently
i have avm in 2014, and that year was one of the most terrifying and destructive years i've ever had
Then how did it go away? Surgery??
What happened with it?
I was born with an AVM in my left frontal lobe, which Iearned about when I had a seizure when I was 7. I had it operated on when I was 8, and again when I was 12. I have no side effects other than a small loss of vision at the top-right corner. Now as a 24 yr old, I really like the thought of becoming a Neurosurgeon
glad to hear your doing great,just found out my son has this at 16yr.
what made you have to go back at 12yr? How have you been doing?
@@MOLEGGZ74 I went back for a check-up Angiogram about that age, and a small remaining piece of the AVM was found
Was there any worries about operating on it twice
@@kieanshlider Not that I can remember. I did lose a bit of peripheral vision though
do you have hemianopsia? where the right half side of your vision is gone? I have that after my AVM rupture and i kind of had the same situation as you just at age 9. what other side effects did you have if you don’t mind me asking? for example i have short/long term memory loss not as severe
I recently had AVM surgery thankful for the surgeons that saved my life.. still trying to grasp everything.
From which hospital u hav consulted to?
And how much u paid totally for getting well?
Sohail Qureshi Free treatment in Canada.
7 months now nd it still scares tf outta me
1i1 Ruiz it’s been a month
Words cannot express the sorry you have experienced. When my son at 2 started experiencing a severe headache I immediately took him to the E.R. My experience as a RN was probably the only reason I took action quickly. Original symptom is severe headache. My son is 15 now. Surgeon said if the bleed would have happened as an adult he may not have survived.
I was only 13 years when I had a stroke. Now I'm 27 years.
I was 4 when I had a seizure. I am now 16 and luckily the doctors prevented it from rupturing.
My son is 1 month old and has it
lived with it till i was 51 then it burst with a loud bang never headache now hemiplegic partly vision loss and my left side but still myself livefull out with sarcasm in my chair still being THE father and ❤️husband to my sweet wife 🙏🙏❤️❤️
The kindest girl I know passed away from this 7 months ago. She was one of my friends and she was only 13 when she passed away.
I had an avm and my gf got home just in time to find me having a seizure in the bed and got me to the hospital just in time to diagnose and treat the rupture with surgery. Am still recovering and trying my best to stay positive everyday
24 during fthe time of stroke. My symptoms were loss of hand eyes coordination and weakness on one side of the body
That's happened to me twice now only 2 weeks ago was my second and went to my local hospital with a headache and got told to go home I was over tired lol hour and half later had a seizure
@@shanebembridge8915I started to have seizures at the age off 33 , found out due to 6cm avm .. how you doing and what’s your next step with yours if don’t mind me asking?
My AVM presented at age 40. In my youth I was always known as the "super crazy girl with the greatest fun ideas"...and I followed through with these ideas with no hesitation or fear. My AVM was pressured against (what the Doc's said) the "impulse control" part of the brain. It was huge... 7cm, a bomb long overdue. Looking back I ignored so many symptoms: nausea after extreme physical exertion and also, what I can only best explain as, "holding a globe of magnetic force energy" in my hands when I was quiet and serene. One day I felt nauseous in the company of my mom. She said I was green. She asked me what the cat's name was (it was there with us) - I said "this is a cat?" Off to the hospital and then kidnapped to Neurosurgery group, etc. and so forth. After surgery It took years (4-5 I guess) to fully recover. I explain my progressive recovery like - a train hit my head, then a MAC truck, then a thug with a baseball bat , and on and on. I had trouble completing sentences, trouble with remembering. But I'm 15 years post surgery and now I'm that not-so-crazy gal with the best ideas. I didn't die and I am so grateful for that everyday.
What treatment was it you had if don’t mind me asking.. glad your doing well
Mine ruptured may 7th 2020 while in the shower. Was my first ever headache and felt like my skull was splitting in half. Passed out and roommates found me. Brought into ER where they ran every year under the sun before looking at my head. Where I had an emergency brain surgery and they got the hemorrhage. Left with left side weakness, I spent 37 days in the hospital and rehab and went back several weeks later to have the AVM removed. That surgery did NOT go as well. It's supposed to be a4 hour surgery. Turned into 4 angiograms and basically 3 seperate surgeries. Totaling 17 hours under anesthesia. It's been a rough 8 weeks. Mine was 8x6mm
This happened to while in the shower too, I had surgery 4 weeks ago and have right arm weakness and speech difficulty... how r u doing now, plz tell me i want to know... i hope you are living ur life as normal and it was before this happened to you...
My birthday is on the 7th and I have an avm and I’m so scared and keep crying everyday.
@@qasimalishakirhope you guys are doing well.. I found out last year I have a 6cm front right temple lope AVM and having gamma knife .. I found out due to a sezuire last year
At 16 yrs old I was diagnosed of having large pronto-parietal AVM, It was discovered since i had a series of convulsions before. Last 2018 I had started my embolization procedure until last 2020 during my supposedly last procedure my doctor told me that my AVM ruptured and I had to proceed to emergency craniotomy to stop the bleeding. Thankfully I didn't die and fast forward to this day I'm still alive though I'm hemiplegic.
I suffered a bleed on the brain from on AVM in 2015, when I was 17. I had a five year follow-up MRI this January and unfortunately, another AVM has formed. Lucky me. Thankfully it's been caught before it could be the same amount of seriousness as last time, but having to have surgery to stop this again is honestly just a punch to my gut.
I had mine at 16 and I have to get mri every 5 months for the next 5 years
Geee that's not fun 🤕🤯 how are you doing now? I am so so worry I got mine mri results I am 34 with a lot a lot of sintoms
How are you doing after those years? Is it back? Or you completely heal?
U had surgery?
@@Butterflyshar7 my brother is 31 and he got 1st AVM attack... Kindly tell me do u have done surgery or not
Please remember friend,-what doesn't kill us, only makes us stronger-after i sustained mine i hopped off of the operating room table and yelled out at the top of my lungs "Hey Life,You Hit Like A Little Girl."
My dad suffered from an AVM when he was in his late 20s, I'm not sure the exact age, but he had to undergo 2 surgeries because after the first one, a blood vessel ruptured and he bled into his brain. He's alive at 60, but suffers from poor balance on uneasy surfaces and feeling nauseous in the morning.
From which hospital, Location?
Ive read about alot of different diseases and genetic disorders but this here? This is the craziest thing ive ever seen.. the way your arteries and veins just tangle up the way that they do.. its scary.
Horrible going to sleep with it ticking in your brain and now knowing what it is
My first AVM ruptured at 11 years old on new years 2011. I almost didn't make it since I was minutes from being declared deceased when drs were able to get my heart beating and the pressure stabilized. I had another AVM removal in 2019. It's not a medical problem to take lightly, it can turn fatal if not treated in time.
My son died from this in April this year. He had a severe bleed, then fell unconscious. He died pretty quickly. He just turned 19
im sorry for your lost.my friend's daughter had the same problem.just passed away today..she is just 6y old😢
Mr Azizul Thank you. So sorry for them. I know the pain they are in.
Hope they rest in peace now and people that she or he left may God give them the peace, my most condolences.. :( My brother is also still 6 yo, he had a severe headache last week. They did a resection this Friday.
I'm sorry🚶♂️💩💩💩💩
I'm so sorry to here that. I too almost died because of my bleed. I'm stay in the hospital for 110 days.
Waiting for an operation to remove an avm which was found last August in my head after a bleeding. Still recovering, feeling dizzy and having problems with balance. I hope I will feel a lot better after the operation.
stay strong, my friend. you've got this. peace,love and light...sincerily: an AVM survivor. '2004🌅
AVM survivor here as well. I accidentally discovered my AVM at 24 and did gamma knife radiation for it. It ended up obliterating my grade 4 AVM. It's crazy how rare this condition is. Most of the views and comments on this video are people who discovered their AVM, it's crazy.
hello ..have u any side effects of gama knife?
@@priyankasoni1538 hello, luckily I did not have side effects from gamma knife. I was informed on the potential side effects. I had a higher risk of side effects. I would gather a good amount of opinions from doctors before making a decision.
How big was your AVM? I’ve just had gamma knife , told having it again in 6months .. how long did it take to shrink yiurs?
@@lukescrimshaw7678 Mine was about 3.6 centimeters. Took 3 years to shrink. Please do your due diligence in picking a neurosurgeon. Get multiple opinions until you feel comfortable. Take care.
@@johnkluscrazy! How did you come across yours? I had a seizure at 33. Yeah I’ve seen 4 neurosurgeons across uk now in London .. mines 6cm so two stages off gamm knife! Hope you have the all clear now and now side effects and live a normal life mate
I've had needle headaches of and on for a few years in the right side of my head. Recently felt like blacking out at work and developed double vision then got a headache a few days after the double vision that felt like my skull was splitting in two. Went to the er found out I have a 2.5 cm AVM in the right thalamus. They said the best treatment is gamma knife. I thank Jesus no major damage happened.
How the gamma knife treatment go?
I was one month away from being done with a 6 year enlistment in the Army. I have no memory of this incident, but one weekend I started hemorrhaging from an AVM in my brain. It was around Monday when one of my friends realized something must be wrong because he hadn't heard from me since Friday night (we usually play pc games online on the weekends). It was Tuesday when my parents called for a police health and wellness check in the city where I was living, and they found me lying on the floor of the room I was renting. My parents were told multiple times that it was likely that I would die. Those two or three weeks I have no memory of. When I actually began to recover and was able to check out of the hospital, I had kind of lost all of my memory. I vaguely knew who my parents were, but didn't really remember them and was under some kind of hazy impression that they were adopting me. In a picture that my parents took of me on the first night out of the hospital, I'm staring back at the camera like I'm surrounded by strangers. I still have some lingering side effects, like disorientation on my right side and poor short-term memory. Hopefully I'll be able to get military medical disability and go back to my regular civilian life soon.
Hope your well? Love to hear more as just found out I have an AVM
@@lukescrimshaw7678 Where is it? How'd you find out?
@@SilientShadowmine in the right front temple lope.. I found it due to having a seizure last year at work, signs were there long before that happen! I’ve had one gamma knife and waiting on it again as had to be staged! Lucky not bleed like yours! So did you have open brain surgery for the bleed and then they removed the AVM totally?
@@lukescrimshaw7678 Mine is a Grade 4, on my left side. I've had 3 rounds of Gamma Knife. It's been going on 2 years since my gamma got finished, had some seizures since due to the calcified area. Now I'm on keppra, which is handling it well. I haven't had an mri in a while, so I'm not sure what it's currently at, but they say it's gone down to a Grade 2 now. I'm supposed to have a consultation with a neurosurgeon, but I'm not sure if I like the idea of open surgery.
@@lukescrimshaw7678 Are you on keppra?
Had my 1st avm at 18 1994.25 yrs later blood leaked from the 1st surgery Going through it all over again☹️ god still don’t want me yet.
sandy mason Wow!
I had this at age 12 - came home from school with a terrible headache and couldn't move my neck without a lot of pain. The next thing I remember I had woken up in the hospital missing half my vision, the right side of my body not fully moving, and having to start math over from 1 plus 1. I have 6 significant disabilities now but I did finish college.
I had the gamma knife eight months ago. I guess it prevented a full rupture but it has left me epileptic with memory loss and hallucinations. I suppose it saved my life but with a trade-off.
I had the gamma knife twice but didn't remove my AVM 100%.
facebook.com/groups/aneurysmavm/
@@catfevermolly I thought they did.
John Sparks yes, I did go to gamma knife twice but the doctor didn’t lock my head and miss 3 area of my brain. Gamma knife remove about 90%. My dad told me. But I’m so grateful I’m alive. This is 2006 years when this happen. The doctor took 10 hours surgery and another 5 hours and finally no more bleed.
Frederic Reinecke thank you for the link. I just join the brain support.
My father was born with a few of these AVM's. For years, he was diagnosed with epilepsy and was given Dilantin to help control the seizures. Shortly after he retired around 1996, he had a severe seizure which put him in the hospital. At that time, modern technology being available, the doctors were able to diagnose him with the correct diagnosis which was a seizure disorder that was the result from the AVM's. I took him to Boston where I met his Dr there and we were told the AVM's were way to big to surgically remove and my father was told the only thing they could do was either go up the groin and use the glue or metal coils. I believe he had the coils and unfortunately within the year he ended up having a massive stroke which he never recovered from. He died shortly after. I am glad there is more help now and ways to properly diagnose someone.
I am so sorry for your loss. My brother just had his second surgery for his avm. I hope we find a cure for this one day.
@@Alan___Cwhat surgery did he have if don’t mind me asking? I’m having gamma knife
Had mine done in Boston when I was 16 and everything has been ok sense.I’m 17 now
Have what done if don’t mind me asking
I was 16 when I had an AVM. Im 24 now, it still gives me nightmares.
Me too. I was 16, in 1980, when I had my AVM craniotomy. You should join this group: facebook.com/groups/aneurysmavm/
I was 13 year old when I had an stroke. I’m 27 year now. I still can’t open my right hand.
@@catfevermolly i have a drop in the leftside of my face still from the AVM
It’s so scary to think there’s others out there that to this day couldn’t recover fully I was 15 when I had an avm , was paralyzed from my left side down from the surgery for like a month until thank Jesus I can walk and use both my hands it’s truly a nightmare! I’m 17 atm
@@Lovindan1 i deaf in my left ear and a small droop in my face. Otherwise im a healthy 24 yr old
I had a stroke when I was only 13 years old, now I am 27 year old
Did you completely recover or are you disabled now?
@@raymcdonalds5209I'm disabled. I still can't open my right hand and my right leg is little floppy. I still driving and going to school.
Thank god that you survived
@@supra9218 Thank you.
I had the stroke when I was 12 and now it affects my left side. I can walk now but my left hand not much of useful anymore. And the surgery affects my peripheral vision so I was told now to drive a vehicle.
When you fall asleep first in sleepover:
Always fell asleep 😅
My mom had just turned 50 near the end of 2006. It was almost Christmas. She went to work and came out of a meeting, laughing with another coworker. They said everything stopped. Her eyes glazed over and she dropped. There was no brain activity and we spent one night in the hospital keeping her stabilized because she wanted to be an organ donor. I miss her. She never got to meet my kids.
I had an avm which exploded 4 months ago and I’ve already made a full recovery
I just recently had an avm rupture last month. I am recovering well and i have my next surgery to remove it next month
Where was it located?
Mine ruptured July 12 2020, went for surgery July 29. Now I am recovering.. happy you’re doing well.
My wife is suffering from this condition right now, she's is the hospital. The thing is, she's pregnant and can't undergo the procedure. The doctor said it would best if she would undergo coiling rather having a surgery. The price for coiling an AVM is too expensive. It's too hard for us .. we don't have enough money for it. Besides, I am thinking about the health of our child too... It's really hard
@@charlesmolina652 What price they r saying?
very beneficial visual creative for public👌👍
Mine was completely an incidental find when they took an mri of my neck, checking out my swollen lymphnodes. I was told I had an 85% chance of is exploding at anytime. 4 months before my wedding. I was 27. So grateful it never exploded!
hwa u now.... and hws they calculate risk of exploding.?
@@priyankasoni1538 I'm good now. No issues. He was gaging by the size and my age and the risk gets higher the older you get.
What treatment did you have?
I'm good now. They surgically removed the whole thing and I believe put a stint in.
I can't remember what equation he used to come up with 85%. I know it was based on my age and the size. I remember him saying the chances of exploding grows the older you get.
my child died because of avm, undetected for 13 years, .. bleeding occurs, she has been for hours in the bathroom, we brought her to the hospital, a neurosurgery was needed, she passed away after two days at ACE Medical Center at Tacloban City, Phillippines. Half a million pesos or 10k US dollar was our hospital bill.
I literally.... woke up from the dead after my avm and the doctors thought it was fucking crazy🤯
There was no more brain activity so they pulled the plug, and then I woke up like the actor from "Kickin It Old School" 😂
Then that chunk of brain got removed and didn't affect my intelligence in the lites.
But I think it's all the bong hit and magic mushroom I took on a daily basis
😂👌
Shame on u..
I was an avid cyclist most of my life, about 7 years ago my feet were going numb a little. Then it was hard to lift my leg over my bike tube, so i went to doctor. He said it was arthritis, and that was it. It got worse, i saw another doctor and he said my gait was off, He ordered a MRI of my brain and spine, but Kaiser hospital made me wait for 1st MRI. I got my first MRI, now they gave me a neurologist who ordered another MRI with dye. Kaiser then made me wait again on list for MRI, i pleaded with the doctor to get it now. I was getting worse, so i called the MRI office to get me in now. The MRI office said if anybody cancelled they would call me, they never called. I ended up in emergency DYING, they finally gave me MRI. They put me in ambulance to Los Angeles Kaiser, cause Kaiser in San Diego could not operate immediately. Now i am crippled for life from the waist down, always pain standing and numbness from waist down. They ruined my life
I hate to hear that, god bless you!
Oh my God so sorry to hear this,I almost did not make my MRI for th cost I paid,my boss offer me to pay what ever the insurance does not cover,My MRI came with AVM results so sad
I’ve experienced one and I actually am in the hospital at the time of commenting this for the avm in my brain
How you doing now? And what treatment did you have?
@@lukescrimshaw7678 I’m doing good. I went for the cyber knife option for a variety of reasons and gotta say, I like that option more
When i was 10 I once had to have brain surgery because of a AVM I’m not sure if it was because of me being born 8 weeks early. Throughout my life that avm got closer and closer building up pressure and one day it bursted causing internal bleeding on the brain i had a stroke on half my body but it wasn’t normal I don’t think one half shakes uncontrollably and the other side is unable to feel temperature I had 1 half and half surgery 1 was to clamp the arteries feeding the clot and the second was to remove it i think the stroke happened after the 1st surgery. Nowadays i just finished both my therapies OT and PT and got off my meds im still delayed at doing some activities and still trying my best!! (I’m 12 now)
Hey, I was 6 weeks early and I basically had the same experience! (although mine wasn’t diagnosed until it burst) I’m still recovering but I’m very happy you did! It gives me hope. I’m still doing PT, OT, and speech therapy, but thank you for sharing!
Hope your doing well
I undergo a surgery last 2017 and now I'm recovering they remove my scull to remove the AV malformation blood clot
What's percentage complications after gamma treatment
I had an AVM I’m lucky to be alive let alone how well I’m doing!
Im 21 and diagnosed with right temporal AVM ... its really painful and i had a seizure... im referred to consult radiology.. hope things turn out well
How you getting on?
Sounds like mines the same …
Can you make a video about facial AVMs and their treatments and risks, please?
Love u all , u make it look so simple
I have an AVM in my spinal cord...
In Israel it is suggested to go to surgery by Professor Lawton..
What do you think?
Hey, I had one on the 1st of April of this year (2021)! I’m still recovering obviously, but I’m either getting the gamma knife or just leaving it alone and hoping it goes away. I got out of the hospital in July and I’m doing physical, occupational, and speech/language therapy. It’s good to see that I’m not the only one!
The place that was affected was the speech section of my brain, and I got rushed to the hospital in about an hour. (I was in a place where we have a lot of traffic at night, and we would’ve been about 30 minutes away from the hospital without traffic) I was in that hospital for about 3 months and then we moved to a very credible hospital up in DC (children’s national) where I stayed for like a month? A month and a half? I’m glad (and not so glad) too see that there’re people with experiences like mine! It helps when you can commiserate with someone who had the same thing or close to the same thing as you.
I was 14 when it happened and I had my birthday in the hospital, and needless to say it was one of if not the worst birthday parties I have had given the circumstances. I had a drain in my head to stop the blood over-pressuring my skull and brain for about 3 weeks. I still can’t walk really well, I can’t talk very well, and I have trouble remembering things. I still have a whole lot of blood in my brain, but whatever that’s besides the point. I’m getting surgery done in September but I don’t know if I’m getting the radiation therapy, putting a coil in, or letting it heal naturally.
Side note, my sister saved my life. She is trained in first aid, and she recognized the signs of a stroke which is what they taught her in her highschool gym/health class that year. I had a stroke which is what she immediately recognized, and then once we got to the hospital they realized it was an AVM rupture. I cannot stress this enough, thank you big sis and thank you school system for saving my life.
tl;dr worst april fools joke ever
Man. I am glad I looked it up since I had one this previous month and a half and I wanted to know mor about it
Can AVM's cause stroke? I just read a person who will for the sake of this question remain anonymous and he said a small hole was detected post stroke, is that AVM
Yes
I was also a left temporal avm patient. I was being operated in 2018 at the age of 17
hey i was also diagnosed with left temporal avm just last month and i'm only 19 years old. How do u feel now after ur surgery?
Fun thing is AVMs can start again and form again after on is removed. It happened to me. I am missing about 1/4th of my brain from an AVM removal and now am going through things again with a new all be it smaller one that has formed.
Just recovering from surgery three weeks ago. Mine was on the cerebellum causing balance issues which was thought to be vertigo.
Do they cause what feels like a bug chewing out if the eye and then a sudden severe headache? I tried to go to the ER a few days ago when it happened but didn't make it there. I saw my regular doc who refused a ct/mri saying it was "just a headache" I know it was not. Upon sitting up I felt a pop in my head then excuciating pain. It's gone now but I fear it return and could be worse when it does. I wish my doctors would order an MRI or ct :(
My younger sister died on April 15, 2024 during surgery. She had brain avm. She was only 39 years old.
I am heartbroken. 💔😭
😢😢😢 I m so sorry for U I have this disease 😢😢😢 I'm affraid because it getting worse day after day
@@Laurie-ginale
I hope everything will be fine, take care, good health.
I have an aneurysm, I'm worried..
@@asias.9330 Be strong girl I can Feel u I have 2 aneurisms plus AVM I enjoy life and embrace my disease ! Love upon you 😍
Sorry for your loss
I had one in2018 at 35, due to other medical issues surgery wasn't an option and just had to wait and see if I would survive. I don't remember any of it but seemingly my mother didn't leave my side the whole month and then I just woke up oneday.
What does parietal lobe curvilinear hyperdense area 1.8-0.5 extend towards superior sagittal sinus means with vascular malformation?
Friend's 8-month-old daughter passed and she had one of these. It was found at autopsy and there was no reason to suspect she even had one. They also found evidence it had bled previously. So sad.
Dr says were born with them🤷♂️ I always suffered with headaches but always played sports etc then at 33 collapsed with a seizure
I was 27 when I had surgery. I had some kind of a stroke and I was admitted to hospital. In the surgery a had a bleed. It's been 4 years and I still have numbness in my right hand but it still works. I play call of duty haha and my brain still works
Does anyone know how long it takes for gamma knife to start shrinking the AVM?
Got a small avm they discovered from am MRI but doctors told me it's very small and nothing to be concerned of
what is size of avm?
How you discover it
Dr Mark Bain. Lol at first glance I thought his name was Dr Brain!
How can one catch AVM before the aneurism eruption? My boyfriend has this in 2021 - very scary. Now I wanted to check if I have it
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Go for a brain scan?
I have AVM and in my area I’m having hard time to see a neurosurgeon the first one I went to see just has me with random testing and I’m in pain feeling dizzy to a point I can’t drive my children helping get out of bed it’s been horrible my left arm weak heart beats with anxiety Im worried & scared no doctor helping me get the treatments I’m going have a stroke
Please look for help soon your kids needs you and you could die because of this.
i have a stroke at 23 from this condition my right arm locked up and i have a seizure then my arm locked up my avm ruptured at 2:00am in the morning lucky my mom was in the room with me when it deciced to rupture
Hello from Brazil
Had this at 24 and stay in icu for 3 months bad headache vomit once a week and now I'm just in despair and active seizures
What treatment did you have? Did yours bleed? I found mine due to a seizure and going to have gamma knife as deep and big
I have had 10 or 11 surgeries towards or open head surgeries, I dont know why they keep coming
Hi, guys. A close friend just had an AVM and now she has stroke like symptoms. Does anyone else know this situation? Thanks
Good information
I had 2nd and 3rd option, hemorrhaging on brain for over 45 mins because i didn't want to lose my hair 😅
My son died in 2 years 8 months 7 days due to bleeding (AVM) in the brain.
My constant headache s and other weird health issues they only treat my headache s I'm scared I have 4 boys and no family support is that all they can do for me really I stopped going to doctor felt like nothing really done and also now I have no insurance NC sucks just truth especially for my mental health issues also
Mine burst at 8 barely survived lost my left peripherals and got epilepsy n I think a little slower
Will at CT scan see this?
Dena no , mr will see
Yes. That's how I found out... #Facts
Thats how mine was diagnosed
C'est ou s'il vous plaît ?
now we have alan becker to support avm
My is not treatable because the doctor said it is in a place that is very dangerous to operate!
Same that’s where gamma knife comes in …
How do people feel knowing they have a bomb in there brain that could go off at any time!!? Mine worse at bed time when it’s quite
how to early detect avm?
Mine at 33 just had a sezuire one day! 6cm avm and always played football etc
I’m here because of Alan Becker’s Animation vs Minecraft series
I have an Avm grade 5
Thuwaalata paalaster pamanaaee dammaa a unaata te. Paanawaa cathaawa naada maga dehaa àhanawa
Please help me my brother brean hemrege
Woah!!!
My brother died due to brain stem avm
😢😭 I'm so sorry
@@Laurie_ginale its not your fault
Wait this ain’t Animation vs Minecraft!
I wanted to watch Animstions vs Minecraft and i get this....
I got treated with the 2nd type...
This is not animation vs minecraft.....
Animation vs minecraft
I sesrched alen Animation vs Anim wth 💀💀
I just wanted to watch Animation vs Minecraft ;_;
Buck Stravenue
I have this desease😢 this gettin worse every day
Worse in which way.. how you keeping
I don’t have AVM