Hello, I just joined this website because my brother is in the hospital as I write this. We are at the John Muir Hospital in Walnut Creek California. My brother was brought to the emergency room Saturday afternoon 11/29 and after an angiogram and MRI they were finally able to diagnose AVM Sunday morning. The doctors explained how he had a bleed in his brain but never explained that it had stopped bleeding until yesterday. So this whole time my family and I were freaking out, as to why they decided to not do another MRI and angio until the next morning. Now that they diagnosed him yesterday, today (monday) they tell us the person that does the embolization is not available until tomorrow. On another more horrifying note, they said the surgery won't be scheduled until Thursday. By that time it will be 5 days since he will be in ICU. I'm extremely scared and not scared to show it. I questioned the doctor today and the neurosurgeon the first day we were here and both seemed irritated that I didn't understand why they have to wait. My brother was already not able to move very well and was speaking incoherently the day we brought him into emergency and he has been intubated and under sedation ever since. Today when I asked the doctor if waiting would make my brothers problem worse he rudely responded "yes he won't be the same person anymore," in a very rude tone.
I am just confused and scared as to why there is all this waiting and just sitting around while my brother still has blood in his brain and we have already seen there are changes to his brain. The sense of urgency concerning this matter is very distressing. I just want to know if anybody has every experienced this kind of thing or if the process for dealing with an AVM procedure has evey taken this long. In a way I feel like they have already given up and accepted the damage he and my family will have to suffer because of the initial bleed. I feel lost and confused and the way they are explaining things had not been very comforting, I'm sorry if this feels more like a rant but I couldn't find anywhere else to turn.
Edwin- So sorry to hear about your brother. What a scary/emotional time for your family. AVM ruptures are so sudden and it is a huge shock when they happen.
All AVM's are different so there isn't a set timeline as to when they are treated. I spent 8 days in the ICU for an AVM rupture about four months ago and I still have not had any treatment done. I was misdiagnosed at my first ER visit then finally diagnosed at a different ER 24 hrs later. Some cases will attempt to operate immediately. The most important thing that I have learned from my experience and from this community- Make sure you have a neuro doctor with a lot of experience with AVM's, and if you don't, start making some phone calls for second opinions. AVM's are rare and experience makes all the difference.
I am a nurse that works at a hospital. A lot of times it may seem like nothing is happening and everyone is waiting around or busy with something else, but most often the docs are really trying to figure out what the best plan of care is and do as much research and get second opinions before making literally life-changing decisions.
God Bless and keep us updated on your brother. This site is amazing at offering support and encouragement and information.
Once an AVM has ruptured, it doesn't necessarily continue to bleed; if your brother were in danger of getting even worse, they would most likely be working on him constantly (getting CT scans or MRIs to check on the AVM and decide what treatment would be best). I can't speak for anyone else, but after my AVM ruptured, it stopped bleeding after a while, they stabilized me, and I actually went home for a couple weeks before coming back in to get an angiogram and then start looking at embolization dates and surgery dates.
It's tough to see someone you love unable to speak coherently and having to be intubated; talk to one of the nurses and ask her about his condition. Ask to speak to the doctor again - he's working for your family, after all; let him know you have questions that you'd like answered and you want to be sure your brother is getting the treatment that he needs.
Write down a list of questions, and take notes when the doctor answers them so that you remember what he tells you. A lot of times, you get a ton of information thrown at you all at once and it's tough to process it and remember it all.
I went into the hospital with a ruptured AVM in late October of 1994. I went back home again a week later once they were sure I was stabilized. I had an angiogram, a couple CT scans, and 2 embolizations in January of 1995, and finally a craniotomy late in January. So it's not too unusual to have a lot of time in between the diagnosis of an AVM once it's ruptured and the treatment.
Hang in there and don't be afraid to ask questions!
Our daughter had an AVM rupture and the repair was done 4-5 months later. At the onset there was a lot of bleeding and her condition was too fragile to operate. When she did have the obliteration of the AVM she had two procedure a partial surgical removal and then embolization. She was at Stanford hospital. We felt we had great care at Stanford. I'm not sure it is possible to transfer hospitals but we started at a different local hospital and transferred within a few hours. There are a lot of good doctors everywhere and hope this helps you with at least one of your concerns.
Edwin..When I had my rupture, it did clot by itself which stopped the bleed. In my case, my AVM was so far back in my brain that they couldn't remove it, however, I had a craniotomy to drain the blood out.
While I'm not sure if your brother is in the same position, you have every right to have a family meeting with your brother's neurosurgeon asking all the questions you have.
As Shirasaya mentioned, schedule a family meeting with the neurosurgeon, write down every single questions you have and write down everything the doctor says. I am very sorry that the doctors at your brother's hospital are not being very supportive to your family.
Please keep us informed on your brother's progress and always know we are here to support you!
Louisa is a very awesome moderator here and we've all heard great things about the neurosurgeons at Stanford, especially Gary Steinberg. Hang in there and from your post I got that you felt that the doctor who was treating your brother was rude to you. Probably the best advice is to get a second or third or fourth or fifth opinion (whatever you can afford... I know it takes time and money) from someone experienced in the treatment of AVMs. If anything, it will make you feel better that you did the most you could. There is a list of favorite docs on this site and Louisa already started that by giving you a link to Gary Steinberg. Yes, every AVM has its own different circumstances (and your doctor will know all the circumstances) but patient and caregiver treatment is a variable too. I realize that everyone has already offered you this information (thanks everyone) but I want to stress the importance of getting another opinion if you want one. Best of luck to you and your brother and welcome to the site!
Edwin, sorry to hear about your brother. It's not unusual to not operate immediately folllowing a bleed. After my bleed I was kept in a medically induced coma for 3 weeks before the eventual craniotomy. My neurosurgeon explained that this was to give my brain a chance to "settle" a bit after the trauma of the bleed. I had a series of embolizations and finally the craniotomy about a month after the bleed. Like Suzy E said, 2nd opinions are always a good idea, especially if you feel like your doctors are being rude. Some neurosurgeons are notoriously bad at dealing with people, but not all. Just know that we are here and ready to help answer any questions you may have Please let us know how your brother is doing.
Thanks for your support and information. I've yet to confirm if the doctor is experienced with AVM's but since he first wanted to stabilize my brother and do the angio in the morning I figure he had some idea as to what was happening.
I'm sorry this happened to your daughter, and thanks for your reply. I had no idea they could wait that long before treating it. Was she under a medically induced coma the whole time?
We also started at the Kaiser Permanente in Richmond and they quickly transferred us to the John Muir here in Walnut Creek. He's being treated by Dr. Chan who is Yale educated. He seemed to know what he was doing he was just not telling us a whole lot about how or why he was doing what he was doing.
Thank you for your reply. We already spoke to Quality Management about my concerns with communication with the doctor and hopefully the rest of our experience here will go smoother. I just feel I had to do my own research and try to find ways to comfort my family with what I found on the internet more than by what the doctors were telling us. I understand it's a very critical situation but personally the more I know the better I feel. Even if it's "good" or "bad" information that might spell out how high the risks are in a situation like this it helps to know exactly what is going on. Right now he's in surgery and we're eagerly awaiting the outcome. I love this website I'm so happy and lucky to have found it when I did, thanks for all your support.
Thanks I definitely feel welcome, I'm doing my best to make sure we make knowledgeable decisions for my brother. I will definitely look into second opinions if there is a need. As of now he's in surgery so we'll have to see how that turns out.
Appreciate the reply, and the information. I can see how extremely different all AVM experiences can be and I am grateful for everyone that shared their experiences. It helps me get a better grasp on the situation at hand. I just hope one day someone who was as lost as I was will find this and it will help them as well.