Thank you for all your responses. Really appreciate the information.
Its great that you did a quick response and took your daughter to the hospital before it could get much worse. I was at the age of 10 when I had my brain AVM rupture. I felt dizzy and wasn’t able to move the right side of my body. Was air lifted to the hospital and luckily the bleeding stopped but had a blood clot in my brain after that. They did a lot of test on me after that. MRI cat scans were the main test but then they decide to do an advanced E.E.G scan. An E.E.G is a test that detects electrical activity in your brain using small, flat metal discs (electrodes) attached to your scalp. Mine was and advanced EEG so it was attached inside my scalp attached to my brain. Your brain cells communicate by electrical impulses and are active all the time, even when you’re asleep. This activity shows up as wavy lines on an EEG recording. I hope they find what they can to remove your daughters blood clot. Let us no how things are going.
Do you know how big an AVM you had? It would also help if you could describe how ill you got and how well you are today, by comparison. I think you had quite a scary time but you do a lot of outdoor activities / hobbies these days.
Its great you’re here, and to echo John_O, a great response to the circumstances. I’m a parent of two, 12 and 13, and am the one with the AVM in my house. I had gamma knife 10 months ago. I’m from Canada but have certainly read a lot about UCLA, and you certainly are in a good place, the reviews are great. Wishing the best, John.
Well its been so long since it happened. I’ll look up my medical records to see the size of the AVM. It was back in 2000 when this all started. The trick with my AVM is that after the emergency surgery to stop the bleeding was done they then said that they would have to wait for the swelling to go down before they could operate on removing the blood clot.
I went to recovery in all therapies Speech, Occupational, and Physical therapy all week long for 2 months. I remeber the 1st day of speech was a real frustrating day. I could speak fine it was the memory of what to say or call something that was damaged the most. The therapist would point at a dog and I couldn’t tell what to call it. I was vary aggravated because I had dog. The part of my brain that was damaged was the Occipital Lobe and Parietal lobe. That effects reading and language. Some of my vision is damaged also but that’s mostly just with bad right peripheral vision not eyesight.
My OT, and PT were a long recovery as well after a month I was able to move the left side of my body but was completely paralyzed on my right side until mid June but barley able to walk with my right leg. Its funny how the brain works the injury is on the left but that effects your right.
After constant CT scans and MRI scans to see if the swelling was going down time for surgery. I finally had my 2nd surgery to remove the blood clot then 2 weeks later was sent home but still went to have therapy.
I kept having seizures so that’s when they did more test and found 3 real small clots that had spread out after my bleed so this meant 3 more surgeries. They were what kept triggering my seizures 2 or 3 a week at least. Some were big seizures and it looked like I’d ben shot by a taser gun others I would just go in to shock for a minute. So I ended up going to have 3 more surgeries in St Louis children’s hospital in 2001.
I Have gone over 10 years with out have a seizure. But I will have to take medication for the rest of my life because of what has ben damaged in my brain but as far as my life now I am able to drive and have a job in welding witch is funny because of all the flashes and light in the job that you think that might trigger a seizure its funny that’s what I ended up being good at out of all this.
Hi ya my names cassie my daughter Lola has a avm which bleed 2 years ago when she was 8 after the bleed she could no longer walk or talk and at 1 point didn’t even no who I was and doctors couldn’t tell me weather she would have full recovery however 2 years later you would never no she went though this and is doing her sports like a normal child tho lolas avm was too deep for surgery so we had gamma knife treatment with we get results for tomorrow it’s good that they can remove your daughters avm hope she’s doing ok x
I can relate very much to what you’re going through because that was my life nearly 9 months ago. On Jan 5 at about 5 pm my daughter (9), son (12) and I were driving home and my daughter suddenly cried out that her head hurt. She had tears in her eyes. I said we’d go straight home without stopping off for a snack first as we’d planned and drove about 5 minutes more. But I kept looking at her in the rearview mirror and then pulled into a parking lot at a busy corner. Keep in mind, we’re in Canada so it was freezing cold and dark but we were in a city of a more than a half million people with great medical facilities–that’s the only reason my daughter is alive today.
Within seconds I knew something was very wrong. She was sweating profusely, had gone very limp, was losing the ability to talk and her eyes kept rolling up. So I called 911. My poor son was terrified. It was the longest 9 minutes talking to dispatch and waiting for help. Fire arrived first and put an oxygen mask on her. Paramedics then took her into their ambulance. Lots of questioning ensued between paramedics, fire and me (trying to stay warm in my van with my crying son). They asked all the usual questions - allergies, illness, drugs and alcohol. She started to lose the ability to breathe on her own so we had to head to the local trauma hospital where they put in a breathing tube. Then we continued on to the paediatric hospital where they performed a CT scan and discovered her hemorrhage. In the meantime of course I was calling people. My husband was still at work 50 km away, my brother met us at the first hospital to take my son so I could ride in the ambulance and my parents and sister-in-law came to the children’s hospital. A neurosurgeon there had been told not to go home as soon as they got the call from the trauma hospital that my daughter was on her way there. That first doctor knew there was something going on in her head. My daughter’s AVM was also in her cerebellum but on the right side. Hers had to be removed immediately because of the massive and active bleed. A neurologist weeks later told us it was one of the worst bleeds he’d ever seen. Neurologists are fun. We spoke with the neurosurgeon for seconds. He basically told us he had to perform surgery immediately to “try to save her life”. The waiting during the surgery was the worst 5 hours of our lives. A lovely social worker and childlife specialist took good care of my family but we were terrified. There was only one other family waiting in there. Parents waiting on their 16 year old who had a very badly fractured femur from flying off a snowmobile – so Canadian I know. They looked as scared as us and I remember wishing so hard that all Katie had was a broken leg. The dad was talking about that being the end of the kid’s hockey career (insert Canadian joke again). Later he asked my sister-in-law out in the hall what we were there for and he looked pretty sheepish when he told her. Not his fault at all-just a reminder that no matter how bad you think things are, someone is always worse off. Anyway, I really thought she was going to die but to pass the time, I just looked at pictures of my sweet girl on my phone and wrote notes to her.
At about 1 am we were taken upstairs to the PICU and the surgeon met us there to tell us that she had made it through, he thought he had removed the whole thing and that her recovery would be very slow. We had no idea how slow slow can be. She was in the PICU for a month. She had her 10th birthday on January 16. It was a truly horrid day while she failed the second attempt to get her off the breathing tube. She had to have tracheostomy and Gtube surgeries on the 19th. She got pneumonia twice and a UTI. She spent 2 more months at that hospital in their complex care unit and then was transferred to a children’s rehab hospital in Toronto (about 45 minutes from home) in March. Trach came out on April 3 which was the best. She really did not fully emerge from her coma until the beginning of May when she started to be able to communicate her own thoughts using a letter board. Up to that point she had been using thumbs up/down and looking at yes/no cards as here only way to communicate. She finally began speaking at the end of May. She had daily therapies while she at the rehab place until August 17 when we finally went home. I should say that we started to bring her home on weekends at the end of April which I believe really accelerated her recovery.
Ok, flash forward to today. Today she is attending school. Grade 5 with her peers. She is very slowly regaining the ability to walk but only a few steps unaided. I walk her to school in a wheelchair and while at school she mainly uses a walker except for outside time she’s in the wheelchair for safety. Her speech has improved immensely but her rate of speech and intonation are affected. She has therapy through a local organization now. She has physio twice a week and OT about twice a month. Speech is starting up but has been a slow process. We have a pool which we heated generously all spring and summer so that she could get maximum benefit. I think it helped her a ton. It was in the pool where she first started to walk unaided.
While at the rehab facility, she had a full neuropsychological battery of tests. Basically her “crystalized” intelligence is intact - anything she had learned prior to the bleed but acquiring new knowledge will be more difficult now. Her injury affects her motor planning and speed of everything including reading, reasoning, sorting etc. She is holding her own at school. Her writing has come an incredibly long way. From needing to connect the dots to make me a mother’s day card to being able to write several sentences now before her hand fatigues. We joke that her printing is still better than my son’s chicken scratchings.
Every day is a struggle – not going to lie. I’m on an extended leave from work. She’s very dependent on me both physically and emotionally but every day she is a bit more like her old self. She jokes and bugs her brother and has still been able to have friends over to play. At the end of August we finally had a birthday party for her that was essentially the one that she had planned herself that was to have taken place on January 8.
Ok, I’ve written quite a novel here. A lot has happened in 9 months. I have one question for you. Is your daughter able to speak at all? It wasn’t quite clear from your post if she is responding to your verbally or through gestures. I know how incredibly frustrating 1 way questioning is. I was my daughter’s voice for about 5 months. Hope this has helped some. Feel free to ask me anything.