Brain Arteriovenous Malformation (AVM) | William’s Story
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- čas přidán 2. 07. 2024
- When William learned his headaches were caused by a complex AVM (an abnormal tangle of vessels in the brain) and multiple associated brain aneurysms, he traveled to The Johns Hopkins Hospital. After many delicate procedures over five months to block blood vessels of the AVM, followed by a major brain surgery to remove the AVM, William is now back living his life to the fullest. Learn more at www.hopkinsmedicine.org/neuro. For appointments, Maryland residents should call 410-955-2228, and out-of-state residents should contact 1-855-884-6754.
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Last year my soul mate of ten years had this but found out about it when it ruptured and was too late. Your body talks to you and you need to listen to it. If he knew what he had he might be here with me today.
Nicole I'm so sorry about your lost. May God bless you and your husband's soul. I'm having AVM surgery Monday 1/14/1019... Keep me in your prayers, please. Thank you.
@@originalmindset5278 how did it go for you? I had my surgery on the 18th of January.
@@originalmindset5278 you had yours 4 days before me
@@vladimyrmorris6554 I didn't have an AVM, I had an AVF. Which was located in my neck. It was about the size of a pea, the doctor said. It was surrounded by entangled blood vessels, that was choking off circulation and causing all kinds of stabbing and shocking pain in my left ribcage and kidney area. The vessels were twisted in my neck and around my spine. They went in my left wrist with the catheter to inject the glue up into my neck to "kill" the AVF that was located there. It was REMOVED, and the pain in my left ribcage is gone. That was torture living with each day, 24 hours without relief. Went through that 24 hour pain for about 6 months, and no pain pill could stop it. However, the surgery left me not so well in other areas of my body... I couldn't walk after the procedure. Everything from my waist to the bottom my feet is NUMB. I MEAN EVERYTHING. My doctor said with "time", I should get back to walking normal again, and the numbness should subside. I'm taking physical therapy now.
@@originalmindset5278 damn. That sucks. With my avm I am so damn lucky. I was back to walking normal and more mobility after a week. And I found my avm just by luck. Hearing how people died is crazy, I'm so happy i caught it so soon and got it removed before it became more of a problem
I feel very fortunate. I've had migraines most of my life and in 2006, an AVM burst in my brain while I was on vacation. My surgeon, too, was at Johns Hopkins and was wonderful. Fortunately, my AVM wasn't so severe and the bleeding stopped within the week. I was able to avoid surgery and spent three months at home while the blood dissipated from my brain.
Thank you for sharing your story with us, Elaine.
Hi elaine how are you feeling now. Did you do surgery or not ..we have the same case any update please
Hi, are you doing okay?
I'd like to meet this man, I am a 24 year old that also suffered from an AVM hemorrhage. I've lost half if my vision, deal with aphasia, and am a bit weaker on one side, but generally I honestly have trouble believing that I am not either dead or worse. This man and I have things in common that very few others do.
Yesterday I found out my father has AVM. I am not a med major in college and I don't study anything about medical problems. This is the first time I'm hearing about what AVM is and I plan to learn more about it. As of now my father is in a coma in which he went in after surgery. I'm extremely scared but I came here to hear other's stories so that it would give me hope. I pray that excellent doctors and surgeons know what they're doing and help get my father back to a normal life.
I pray for your father! I hope he gets better. It is really difficult not only for the patients but also for their family and friends. I am 16 Years old now. December last Year I got my diagnose. AVM in the brain. Located in the section for movement and talking. The problem about AVM is of course you never know how long the avm will hold. Sadly it seems like your fathers one wasn't safe to "let it be".
He will get through it. I am sure he, just like you and your family are strong persons. Keep going and be there for your father. That is the best thing you can do.
@Robert Bergin Oh my. I surely hope your mother is doing well now and I don't know but if she's not with you anymore then God bless. God bless your family.
@@FortexVize I pray for you! You must be a very strong individual. My father had some brain damage in the section for movement and talking. Currently he is now 45 days and counting in the Hosiptal. Still in a bit of coma with few responses but still paralyzed from the whole left side and has not spoke a word since the AVM burst. He responds to commands with his right side. Somehow I still believe he will walk again someday. Thank you and I pray for your well being. God bless you.
@@FortexVize Stay strong Fortex, I wish you all the best in your surgery and God bless you. I'm having AVM surgery Monday 1/14/1019... My AVM is located in the back of my neck near the spine. It's the size of a Pea I was told. Keep the faith Fortex. God is good. You'll be alright.
@@josemagana9439 God bless your father, Jose. I prayer that he recovers to a normal life swiftly. I'm having AVM surgery Monday 1/14/1019... My AVM is located in the back of my neck near the spine. It's the size of a Pea I was told. Keep me in your prayers, please. Thank you.
This guy’s lucky. My avm was only learnt about when it finally burst. I’m glad he didn’t have to go through that hell.
Same for my daughter. No symptoms or warning signs before the hemorrhage. Massive bleed and stroke.
Same 😔
What happened with your recovery guys happened to my brother 2 weeks ago
@@jasontatume1372 where did it burst? Most will undoubtedly need physical therapy, and if it was located near the brain, anti-seizure medication as well.
For me, I had to receive both, but the meds were for a much shorter time. However, I had many months of physical therapy, and wasn’t really recovered until about two years later. Still aren’t completely, but it’s better than before.
@@maxmillianwiegel1643 It burst in his left frontal lobe/parietal
I'm 16 and I had an avm in my left leg. Yes it was actually in my leg, it was in my thigh and it was huge. I had an aneurysm inside of mine. I've had 4 embolizations done this year to block off the entire thing, 3 of those embolizations happened in less than 6 weeks
Just found out my boyfriend has avm after many test of uncertainty of what was wrong with him ☹️ because he can’t feel his arm so they decided to do one last test and that’s when they found it. Avm he meets with a neurosurgeon this coming Tuesday so please everyone keep him in your thoughts.
We're sorry to hear what he's going through, and he's in our thoughts.
As someone who is that current position, I empathize. My boyfriend also was diagnosed with AVM after he temporarily lost half his vision during a migraine. Later we found out he had 6cm AVM located between the occipital and parietal lobe. In the last 4 years, he had 5 surgeries which were 3 embolisations and 2 gamma knife. Throughout the whole journey, the main thing got both of us through it was the mantra," Focus on what is and not the what if." When you talk with your surgeon write an answer to questions or record on your phone with permission. After you are done with the consult go do something that you both enjoy to decompress. When you are both calm state mind discuss the options with your partner then make a decision. From our experience gamma knife was a lot less invasive and had min side effects however it takes up to 2 years to know for sure if the surgery worked. We were told that side effects like seizures, headaches, nausea and so on may occur as late as 4month after the surgery. Embolisation from our experience has been a harder recovery however after 2 months of migraines he was back to normal. He was told on the first consult to stop lifting heavyweight, stop competitive swimming, and keep stresses to min. After his second surgery, he went to see a therapist for a couple of months and started mindful thinking/journaling. Now he is a pro when dealing with stress and communicating his emotions. By listening to him and being there for him will only make your relationship stronger and make the process easier.
God bless
I have a avm but was told it would be to dangerous to operate on. I fear everyday of what might happen.
Happy for you, my treatment didn't go that well but miraculously survived. I also had a big one on my right temporal lobe , undergone through lobotomy, craniotomy, skull graft , coma and so on
Hi Nikolas? Are you doing okay now?
I have an AVM grade5 and epilepsy simple partial seizures and grandmals ..dilantin is working so far
My mom (53) got the avm treatment then the surgery she's currently recovering in the hospital can barely speak or move her right hand but reacts pinching so that's a good sign. I'm really worried for her and watching a few story's and recoverys is very helpful and relaxes me a bit. I hope no one has to go through this or have a family member go through this.. Especially during covid where you can barely see your own mother in the ICU
How is your mother doing now? God bless her
@@jameshyman2497 thank god she's doing much better, she pretty much had a stroke on the operation table which is why her speech got messed up and right side is mostly numb. But for the most part now she's talking more fluently and walking a bit better, some days she feels better than others.
She had a level 4AVM after spending 3weeks in ICU and nearly 2 months in Rehabilitation we were able to get her home with a wheelchair until she had enough strength to get out of bed and make an attempt at walking. She's a survivor and she's been both a mother and a father to me. She's the only one who keeps me going
@@HumbertoHacked Amen God is good. Now you have a brother I'm always here friend
@@HumbertoHacked I’m really happy for you. I currently have an AVM and I’m really scared of what’s going to happen to me. I’ll have to see in my appointment in July
@@Edd03 do you know what level of avm it is?
Mine burst some 22yrs ago, showed signs long before that though. Family chalked it up to a kid being a kid. GCS was 3, doctors saved my life and the life of our daughter.
My best friend has an avm on his right frontal lobe hes going in for embolisation surgery tomorrow and removal surgery the next day i know hes going to be okay.
What happen?
Alpha Omega everything went great thankfully the avm was fully removed no complications and hes back to normal.
@@Pain-Glory Great news! Thank you for replying.
Alpha Omega thank you 🙏
@Hip Hop & Finance thank you so much
I wish I could have known that I had the AVM but it ruptured and now I am too young to be this old. I stroked out one day.
God is Good
Hi I also had AVM removal last year do u experience any headaches or pain at surgical site still ?
Hi Ambreen, we recommend reaching out to your provider for more information around these questions.
I got diagnosed with AVM two months ago. I’m 21 if you have it please hmu I’ve never heard of it until mine ruptured.
My son has a grade 5 AVM in his brain. It was discovered last month after he had a seizure. His sister has a brain tumour (SEGA) & my other son had tumours on his parathyroid & also neurosurgery when he was a baby. I’m not sure why all 3 of my children have had these conditions.
They can be genetic
@@Evie-Hope yes genetic link would explain it, but not in my family’s case, all are unrelated to each other. I checked with the neurosurgeon, he said we’ve just been unlucky.
This give me hope I go for my surgery April 10th
Free spirit my best friend has an avm on his right frontal lobe hes going in for surgery tomorrow i know hes going to be ok good luck with your surgery man.
@@Pain-Glory thank you so much and mine is on the right as well. I'm scared. Yea he will be ok!
@@Pain-Glory thank you for the good luck I'm sending some to your best friend ! Hopefully this experience will be over soon for us
Free spirit Yeah man you’ll be fine put your faith in your neurosurgeon team they will make sure you come out ok 👍
@@Pain-Glory okay I will :) I'll give you an update afterwards too!
hi, i also had an AVM in the brain
I'm have a AVM on 2018 now been over 2 year I get a stroke I'm only 26 years old and I have 2 kids it please think very be careful to choice to remove the AVM ok they will change all your life 😢😢😢
I complained for 25 years of my head hurting everyone told me I was crazy, the state of Ohio had me put on meds when I was a kid, people thought I wanted drugs or atlttention a year ago my avm I never knew I had bled into my brain the doctor in Columbus saved my life if it wasn't for him I would be dead because of all the evil people in this world
I know that feeling mate I have been complaining about the headaches for years since I was 15 went at 25 to the hospital got told it was just migraines went back at 3q nd was told I have one in my right tempal lobe waiting on radiosurgery, is there any support groups?
My son had a grade 4 avm in his brain. He went through radiation gamma knife and is seeing signs of decrease but is now experiencing disturbances in his vision which is very scary to me. I sometimes wish he got surgery to take it out but we were very afraid about him losing his vision. It is going on a year since he had the radiation. The procedure was done at Johns Hopkins but sometimes wished we got a second opinion of what would be the best option because we don't know if the radiation has damaged his eyesight.
Hey just carious how’s your son vision? I’m a bit nervous I’m getting the gamma knife sugary in two weeks just looking for a lil comfort hope all is well with your boy god bless you guys !
@@JasmineSmith-le9gx my son is doing good. He still has eye disturbances from time to time but he has been coming along. He also still experiences headaches but not as much. He still see the neru ophthalmologist to keep abreast on his vision and get an MRI every 6 months to track the process. He is still seeing some strinkage. It's our hope that it completely dissolve because there is talk about having the radiation done again and pray that he doesn't have to go through that again. I pray that everything goes well with your procedure and you have great success on the strinking with no complications. I pray that God will take away any anxiety that you may be feeling. I pray that God will heal you and take away this avm completely. Have a blessed day.
My fiancé has brain surgery 4/26 it was removed successfully
March 1 2022. I'm having my avm removed. I'm really scared
Good luck with everything man. I have one also but it’s in a spot were only gamma knife is possible
@@tonymoots7955 I'm here for your support. YOU gonna pull through T. God got us
@@tonymoots7955 Tuesday March 8th I'm getting mines done. I'm scared but I know God got me. I wish everyone the best and blessings
@@jameshyman2497 give us a heads up when you feeling ok
Hi i have AMV and i am really worried because i took a nursing course. Anyone here who was removed by gamma knife?
Hey how was your gamma knife surgery?? I’m going in in two weeks and I’m very nervous hope your doing well
I had AVM in the right templer lobe where my swelling would look like a gulf ball I went to NYU and had the successful surgery, I lost some memory but im okay
I had one there as well! Glad you’re alright :) if you don’t mind me asking, did your memory get better as time went on?
@@ghastxm2083 actually no it's worse I'm a much older man so it would difficult to say but I went thru hell. NYU saved my life. But again I'm not the same.