Brain Arteriovenous Malformation | Kate’s Story

When Kate was unable to be wake up one morning, her family sought emergency care. An MRI revealed a brain arteriovenous malformation (AVM) - a dangerous tangle of blood vessels that connects arteries and veins in the brain. Johns Hopkins cerebrovascular neurosurgeon Justin Caplan performed multiple embolizations on the AVM and later surgically removed it. A follow-up angiogram one year after the surgery showed that the AVM was completely gone. Kate has a newfound love of the medical field and is working as a medical research coordinator. #ArteriovenousMalformation #JohnsHopkins

[@johnklus]

Glad she's ok! I have an AVM as well. Thank you to the world of neurosurgeons who have the knowledge and gift to invest their life to understand the brain. I had mine treated with gamma knife radiation at Northwestern Memorial but what amazed me was that I got opinions from neurosurgeons and radiation oncologists all over the country and they actually gave me advice purely from their heart.

[@quickflip7185]

Same!

[@SanaAdnan-qy9wt]

Are you okay now?? I have an avm too and Dr suggested me this same procedure...what do you think about this?

[@louisbollard2060]

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.

[@Bellafaith235]

My 14 year old son suffer from a AVM he now has to learn everything all over again. He fought for his life 8 days after his 14th birthday

[@hunter65443]

I am so happy that your son survived. Have a wonderful holiday❤

[@Bellafaith235]

@@hunter65443 Thank you hunter🙏🏼

Kate, thank you for sharing your beautiful story. I live in Brazil, I also have an AVM and in two weeks I will undergo the same procedure as you. I will undergo embolization and later craniotomy. I have faith that soon I will be able to tell the same story as you, the story of healing! 🙏🏻❤️

[@AnaCarolina-kk5qz]

Oi Gabrielle, tb sou do BR e nasci com MAV cerebral. Minha cirurgia foi em 2020 aqui em SP Espero que tenha dado tudo certo na sua cirurgia 😊

[@sonjajohn1166]

I read your comment and was hoping you could share a little information about your experience. How was your life before surgery? Was you in pain? Did it affect you mentally or physically? What was it like during and after your emblization and surgery? I want to hear from anyone that has lived with this. My daughter is 29. She and I are in her hospital room awaiting surgery as i write this comment. She was diagnosed in October 2023 with an Arteriovenous Malformation in the brain. For years she has lived with mental and physical problems that seemed to be "all in her head" ,as she was always told by physicians and others. We knew something was wrong but never could figure it out until an ER doctor did a CT scan on her brain due to her worsening headaches. That is when the AVM was discovered. She had the embolisation 5 days ago and was scheduled for the craniotomy 3 days later. She was in ICU for 2 days when we were told the craniotomy was rescheduled for a 5 days later. This would be the second time her surgery was rescheduled. The embolisation was rough on her. She has had bad pain in the temple area on her right side (the embolized avm is on the left). One of her male nurses said my daughter just like taking the pain meds and actually withheld meds from her which caused her severe pain and she began throwing up. He acted like this type of surgery was no big deal. Yes, I am still upset about it. My daughter is now terrified to go through with the surgery. I am scared too.Was recovery long and painful after the surgery? Please, We need any information or help you or anyone could share with us. Thank you for taking the time to read this. God bless you all. Sonja & daughter, Hannah, from Louisiana USA

[@user-jd2hu3dv3h]

I had a stroke in oct 2022, i had avm removal head plate and clot removal in jan 2023. The back of the head feels like your laying on rocks or gravel. At one point my head felt super hot and a cooling pillow helped. I didnt have access to ice but mayb some ice peas would help just use a cloth under them. Ive been suffering from dizzyness, nausia and weakness on left side of body. Im in pt and i go to gym. Walking is a good exercise but can be difficult. Im hoping to get better. Another thing you can check is her thyroid. I had multinodular thyroid and had mine removed. I hope your daughter gets better soon and be patient. Take care

[@sonamchoden1431]

My sister has been suffering from AVM for a long time now and she has been having multiple of seizures attacks in this recent years. She has been taking medications and it is not working which as affected her physical and mental health.I am young and my parents are uneducated so it makes me very sad to see her in this situation. I am so happy you had a safe surgery. I hope we will also be able to find a nice doctors and be able to lift her and everyone one form this sadness.

[@annetteclipman9333]

What a beautiful story! Thank you Dr Caplan and Johns Hopkins !😍

[@maryabrown4472]

I had an AVM rupture almost 6 years ago. My bleed stopped bleeding and wasn’t able to speak, read or write. (I’m an elementary teacher … so ironic) I went through rehabilitation to work on those things… and then I had my craniotomy two months after my rupture. I never knew I had it like most of us. I had no pre symptoms but thinking back, I did have what I thought migraines, and once when I was 14 my fingers on my right hand went numb, my tongue had no feeling my eye had an aura, but that had never happened again since my actual rupture. The AVM went deep so I also had Gamma Knife to zap out the rest, and there is still a very little bit left in there. I’m on seizure meds since my rupture, and very few focal seizures. Although it was 6 years ago it feels like yesterday.

[@yoehonjohn4832]

Heck of a ride. Good to see she’s in good health. I had my AVM rupture back in 2000. I was 10 years old. Ended up having 4 surgeries. Look like your average person but a little struggles with memory loss.

[@sarahmillington5799]

I hope you don't mind me asking but how come you had to have 4 surgeries? My daughters unknown AVM ruptured last July just 10 days short of her 10th birthday. She had embolization and craniotomy and has made a brilliant recovery, just some short term memory issues. X

[@johnklus]

You’re a fighter Yoehon! Keep up the good fight

[@yoehonjohn4832]

@@sarahmillington5799 Ok I'll try to make a long story short. I didn't no that I had an AVM until the rupture in May of 2000. Was say around 5 in the afternoon on a Friday when the rupture happened. I was air lifted to the hospital in Louisville and luckily the bleeding had stopped. I had Physical, occupational, and speech therapy for 2 months. I had my 1st surgery to remove the blood clot and to patch up the blood vain. I was then sent home a month after that but kept having seizures. luckily not the big type but would still have them 2 to 3 times a week. I dealt with that for a year and my neurologist in Louisville then said I should go to St. Louis children's hospital. There ranked top 5 in the US on neurology. So went there and they did more test. One weird thing they did and what I call the Half surgery is a EEG scan. ( You can look that up if you want but mine was a little different.) How they figured out what was causing the seizures was by scalping of part of the top of my skull and putting wires on the actual brain. They then forced me to have the seizure to figure the problem. They found 3 more peace's of damaged brain tissue from the rupture and my brain cells weren't happy with it and that's what was causing the seizures. So ended up having 3 more surgeries. After that went an entire moth without a seizure and they tried reducing my meds but that didn't work had a seizure. They figure its just because I'm missing a few small pieces of my brain. They said your brain cells work like like a traffic light system but the problem is I'm missing some pieces of my brain so the pills fill in the gap but if I don't take my pills all lights are green brain cells collide then seizure. have gone over 10 years without a seizure only bummer is I'm stuck on them forever.

[@thelmaparnell296]

I was just told I have this. Have a consult with neurosurgeon

[@quickflip7185]

Please get multiple consults. Different surgeons have different approaches. Do your research (including the cons of treatments) and make the best decision for yourself. Best of luck to you! Been there; done that. 🙂

[@thewonderlandsystem6276]

I was just diagnosed today also. I received a referral to a neurosurgeon ASAP. I’ve been experiencing seizure-like episodes (my symptoms are similar to focal seizures), and was wondering if anyone else had a similar experience. My neurologist isn’t convinced that my episodes are caused by my AVM.

[@_Kermie]

New FE2 crazy looking fire

[@Laurie_ginale]

I have this desease 🥺😢 I have 2 blood clots in the brain ( aneurysm ) I'm really Afraid

[@dougieboy777]

i had gamma knife radiosurgery for 2 large AVMs in the right side of my brain this. Years of migraines, mini seizures etc things are looking up. Hang in there folks.

[@inzamulzami5363]

I've brain Avm left side 😢 can anyone help me to survive.

[@mattdemo6387]

🤔Are there any other AVM stroke survivors like me that think that it should be a mandatory thing that should be searched for in all humans? Plus tell them they will possibly have drop to the floor seizures after the brain surgery, 😵 It's scary as hell when you're possibly about to die a second time... and a third time,😂👌🏾and Exedra