Fiance AVM rupture

Wednesday April 22nd my fiance Jim was rushed to emergency because he couldn't speak correctly and couldn't hold anything in his hand. When I arrived within minutes of him getting there he could speak to me but some of the words were wrong. Then he suddenly got a massive headache and started convulsing. It took the doctors about 40 minutes to get the breathing tube in so they could get him down for a cat scan. They found he had an AVM and it had ruptured. They transported him to another hospital and operated on him to remove it. The neurosurgeon told us the bleed was so large that he did what he could but wasn't sure what the outcome will be. Jim has opened his eyes a couple times and can move the left side of this body but not the right unless stimulated. He can respond to basic commands such as wiggle your toe or squeeze my hand. If I play a certain song that he used to cry when he heard it before all this he will cry. He also now has pneumonia and an infection which the doctors say may be one of the reasons he isn't waking up quite yet. The day of this happening I was in the middle of picking wedding dresses and he was 100% fine. It's so hard because the doctors won't say much about recovery and honestly when I see the doctor I go the other way because I don't want to hear what he might say. I feel like I'm in a nightmare and can't wake up. I'm so scared but holding on to trust in God and strength from Him. I've read a lot of topics on here about scheduled surgeries but not a lot of ruptures. Jim had no symptoms whatsoever so we had no idea that this monster was in there.

I'm so sorry that you're having to deal with this when you were planning something so much happier than hospital stays and serious medical issues!!
Ruptures are one way people discover they have an AVM - most people never know they have one until something severe goes wrong, often a headache worse than any they've ever had before. Often a rupture is the starting point for treatment - chances are good that the doctor is going to want to stabilize your fiance and get him past the pneumonia before any kind treatment for the AVM itself.
It's so hard to realize that someone can be just fine one minute and the next minute they can be fighting for their life; stay strong, lean on your friends and ask for help and support when you need it, and let us know how things go.
Treatment and recovery may take a long time. Your best source of information is the doctor, so if possible, try to work up the courage to speak to him. He can answer your questions and help you understand treatment options better than anyone else can.
There are a lot of people on this site who have recovered and who are leading normal lives - other people here are working on improving.
Having an AVM doesn't mean you can't recover, it means you've hit an obstacle and will need help to overcome it.
Stay strong, ask for help when you need it, and please use us as part of your support system!

What a shocking experience you have been through, tonil. So much improvement is possible, and Jim has so much potential for recovery. Check out our member Danijo's story by typing her name in the search box at the upper right. It will give you strength, I am sure. There are many success stories after rupture here, so stay strong and positive.

I am so sorry this is so scary. Very few people have symptoms. Hopefully they are keeping him upright to help with his lungs.
Just keep talking to him. Its like being in a thick soup trying to get to the surface and he is in there!
Dont give up on him talk to him on his good side.
Sadly most doctors dont treat AVMs cause they are rare. It takes time for our brains to heal and many of us who had strokes were unresponsive for days to months. Now we are back.
When he is awake ask him if he is in pain get his pain managed and ask if he is nausea
they can give him zofran to help with that
When he is out of the hospital diet is important for recovery try a diet with high protein high fat like kerry gold butter and coconut oil
Dont have the tv on the news something peaceful like old movies
Rub his feet and hands
If he likes certain smells bring them ie like lavender or lemons etc
Sign up to get info from the American Stroke association
We are here for you and ask away, vent away we are here to support one another and we all know that doctors dont talk that much and you will probably find more information here to help your loved one
Keep us posted on his recovery and how you are holding up!

I had a Brain Haemorrhage and a stroke in December 2014. Like your fiancé I had been well and had no warning signs. I woke up one morning unable to speak properly and unable to use my right arm. I was rushed to hospital by ambulance after a paramedic came to my house and accessed my condition. I was given a CT scan and it showed I had a 5cm bled in the left temporal.i also got a really bad headache but didn’t convulse. I was admitted to a ward. The CT scan was emailed to a neurosurgeon to access my condition to decide whether to operate.they didn’t operate on me. I stayed in hospital for 5 days and asked to be allowed home as there no treatment apart from pain relief for the headaches. I couldn’t relax or sleep properly in hospital and felt I would recover better at home. I could only do this as I had marvellous family to look after me. I had an MRI 2 months later where they discovered I have an AVM in left temporal lobe which had caused the brain haemorrhage and consequently the stroke. I have seen a neurosurgeon who has recommended 4 options. 1. Embolisation 2 radiation 3. Surgery to remove the AVM. 4. Do nothing. I am presently awaiting further diagnostic treatment and have been referred to Vascular MDT. Depending on the results of the angiography we are then going to make decisions about treatment to move forward. My neurosurgeon thinks I’m too young not to do anything but it’s depends on the angiography. When this happened to me I thought my life was been blown apart overnight. It’s is 6 months since it happened and people who meet me now can’t believe what has happened. I can speak again and only have mild motor dysphasia. When I am tired my speech slurs and I have difficulty pronouncing words. I get tired more easily. It takes a lot more concentration to write and I sometimes can’t remember how to spell and construct sentences easily. I don’t think I will be able to return to work full time just yet and not to the same career as I was a sales executive with a very stressful job. I have had a remarkable recovery. All my doctors and nurses are amazed at how good I am. Keep positive. I always knew I would get better. I worked on my speech everyday with the help of speech therapy. I had occupational therapy to help get the use back in my arm, I couldn’t style my hair, it took me ages to get dressed. It’s was very frustrating as I am a person who has always done everything at 100 miles an hours. Know one can tell you what his recovery will be like just yet as everyone recovers differently, no one would tell me. I only say to you is to keep positive ( I know it must seem impossible just now) keep the faith, and never give hope. From what you say the signs are positive ( I’m not a doctor) . His brain will need to rest to recover from the trauma and sleep will rest his brain. I’ve got a good feeling about him. I know that sounds silly but I had the same feeling about myself. I told the nurses( by writing) I knew I would get better and I have. Wishing you love and all the luck in the world.

Hi Lucky and I know that I just recently welcomed you. Your posting here is awesome! Yay for your remarkable recovery!

Thank you Susan. I’m so glad I have found this site as there is not much support where I live as people don’t seem to know much about this condition. I hadn’t heard of it either before my haemorrhage. I called myself Lucky as that’s how I feel…Lucky to have survived this with so little permanent neurological damage.onwards and upwards !

Wow, first off I just want to say great job at hanging in there and being by his side . I can only imagine how tough things may seem right now but it can only get better from here. What helped me remain strong after my bleed and stroke was m boyfriend by my side talking and encouraging me so every bit of positivity goes a long way. As others had mentioned, you really don’t know you have it until it happens . I was completely fine one day until I started working out then I just collapsed at the gym. Glad to read that you’re hanging in there and trust in gods plan :slight_smile: just remember: all the pain that you’ve been feeling , can’t compare to the joy that’s coming . We’re here to support you while you’re going through this so know that you’re not alone and reach out when you feel the need to.

Hi Lucky, thanks for the comment and many people mention that they have never heard of AVMs before they experienced one. I was one of those people! Yay for you feeling lucky!

Sorry to hear about your fiance. No doubt this wasn't in your plans. As others have said, most people don't know they have an AVM until it ruptures, myself included. While I have some deficits, I am able to lead a relatively normal life. My husband was right by my side the whole time. I'm still a wife and I'm still a mother of two girls. Life isn't perfect, but we're all happy! Life may never be "normal" again for either of you but you will adjust to whatever your normal will be. Treatment and recovery take a long time. Try to have pateince. Hang in there. It's a tough road but you'll get there!

I had a rupture in march 2014. I had no idea and no warning signs. I had a awful headache and told my boyfriend to call a ambulance. I had a seizure and i was rushed to the hospital where they open my head up and it took three plates to put it back together. I was also. 4 months pregnant at the time! Everyone has a different out come. Im sure he will be fine and you will get married when he gets better!

I am so sorry to hear about your fiancé. I know you are really scared and worried but you hang in there. Jim made it through surgery and responds to basic commands and that is a good sign. Physical therapy will help him regain the use of the right side of his body. And pneumonia may be one of the reasons he isn't waking up yet. Once the pneumonia clears up, I am sure you will see improvements. I had an AVM rupture (no prior symptoms) and was in a coma. I was not able to move my left leg after my craniotomy, but with physical therapy, I regain full use of my leg. It took time, but I made a full recovery. I know Jim will too. Sending prayers, good thoughts and well wishes for Jim and sending hugs to you. Please update us if you can.