Hi.On August 10 my husband suffered an AVM bleed. Up until then I never knew such a thing existed. His is apparently small, located behind his left ear (left temporal lobe?). The current suggested course of action is to wait for the blood pool to absorb and swelling to subside before addressing our options. He has difficulty reading although he can spell the letters. His music preference has shifted from rock and roll to classical orchestral. He does not want to rest. I took away the car keys and he hopped a bus! I don’t think he has ever ridden a bus before. He is " fascinated" by this whole thing. Has anyone experienced these symptoms and does anyone have any suggestions on how to handle this? I know he does not want to be babied but this is so new. Thanks for any advice
I had roughly the same bleed 18 months ago - A small frontal lobe, rather than temporal lobe. The Neurosurgeon also recommended that the blood dissipate before looking at the options - I ended up having a craniotomy 6 months later.
I'm surprised you had to take the car keys - there was no way I would have been allowed to drive, and I did find the whole thing fascinating - I'd never heard of an AVM either. I also difficult reading and writing, but overcame that with therapy. Is he doing or is scheduled to have therapy? - That worked a lot for me.
Each person's AVM is unique, and behaviour can change - and you should tell the neurosurgeon / therapist about this.
I too never heard of an avm until my bleed. I know this is all new and hard to coupe with. I would suggest a few books: “My stroke of insight” by Dr. Jill Bolte Taylor, “Rewire your brain” John B. Arden, and “a bomb in the brain “by Steven Fishman.
Your husband has a long journey ahead of him. The more you can learn the better it will be for you both. Keeping all the medical records, bills, and other information organized is essential. Writing down all questions for your doctor is important too. I have a file box just for avm related information. They do have vocational rehabs that help with cognitive issues. Any rehab he can get is important! If you cannot afford rehab, a lot of states offer them for free.
You came to a great place to get information, advice, and support! I wish you both well! If there is ever anything I could do please fill free to ask! Sorry for such a long response!
Thank you Paul. I do realize that eceryone’s AVM is unique but how long did it take for the blood to dissipate and did you improve any during this time frame? At this time he is not scheduled for therapy as he was just released from the hospital. Our next appointment is in about 3 weeks with the neurologist and next week with his primary care physician. I took the car keys because, allowed or not, he just got in and left. It’s hard to monitor an independent man 24/7 and, as he’s never been sick a day in his life, my learning curve is proving to be rather steep.
Thank you Melissa. This site and all the people have been welcoming and helpful. Thanks again for your advice
Hi there my 15 year old daughter had an AVM last year she was si bad she had to learn to walk again. Its a post code lottery in treatment. Its a fact that personalities changed and likes and dislikes too.
My daughter when from shy to outgoing
The older you are the smaller the risk of a re bleed.
AVM of the brain affect one in a hundred thousand people and most people know nothing about them till the rupture. Here if you want a chat
Hi Patty. We have well over 4600 members on here. So far I have only found a handful of people who knew what an AVM was before the bleed. Most experts think it only occurs in about 1% of the population. Unfortunately, your husband is in the early days of recovery yet. Please be sure to take care of yourself. It is sometimes harder on the caregiver!
Thank you Paula. Knowing we’re not alone is comforting during this time.
Thank you Barbara H. Unless they are in the medical field, I’ve gotten nothing but totally blank looks when I say AVM. While we’re in a small club we didn’t choose to join, the members here and the information shared is something to be thankful for.
You are like a lot of us who joined the "AVM Club" without knowing the "club" we joined.
I can't say that I experienced anything like your husband and you have experienced since mine was in the left side of my neck. But I definitely can say that the AVM has changed me.
I honestly enjoy this label in many ways because it puts me in the same group as these wonderful members of this site. Since we have so many members, I hope that one of them can help you more specifically than I have.
Welcome to the group Patty. I had heard of an AVM before my bleed because my aunt also suffered an AVM bleed several years before mine. I didn't however know I had an AVM. My bleed was massive and I was in a coma for a few weeks before receiving treatment. It was about 3 weeks in a coma (partially medically induced) before 3 embolizations and finally the craniotomy. The whole time in recovery I too was fascinated by it all! It amazed me what I could not longer do. How simple tasks were no longer simple. How I could no longer do simple math. How I could forget something that happened 5 minutes before but still remember every song lyric to virtually any song ever written. If you take the horribleness (not really a word, but...) out of what happened, it truly is fascinating! I wish your husband the very best as he starts this journey. Please let us know if you have any other questions.
Thank you Debbie. I know the road we’re on is going to be a long one but the up side so far has been meeting such wonderful people.
Thank you Trish. Sometimes it’s hard for the caregiver to see the fascinating aspects but I am learning. It’s something new every day and sometimes that something can be a good thing. Glass half full instead of glass half empty is my new motto.
Hi Patty, my husband had an AVM bleed on June 21, and we'd never heard of them either. He had embolization surgery via angiogram to seal the AVM which was on the right side of his Thalamus, deep in his brain. Victor cries alot, is emotional, his taste in music has changed. He's still a bit wobbly on his left side, slurs his speech sometimes, etc. and is doing cognitive rehab at our local Rehabilitation hospital for people who've had strokes, etc.
Good news, is that while he had to suspend his attendance at college, he is working part-time with support from his boss and the restaurant staff (Victor is taking Culinary Management and works as a grill cook at a steak restaurant)
It is early days yet, and I guess I just have to be patient and supportive. Financially, we are a disaster falling behind on bills, but at least we have free healthcare in Canada.
Keep me posted!
I was released on Feb 1 2011, and I I definitely improved during the two months following when I was having therapy. It got to a point where the therapist said 'I can only take you so far - the rest of it is up to you'. It was at about this point I was OK'd to drive again. I had a follow up MRI and Angiogram at the beginning of May, to get a clearer view. The craniotomy was at the end of June.
Hello On July 10th My husband had a severe vomit that lead to nausea and passed out in bathroom. When I came in the bathroom I saw him lying flat on the floor with blood coming out of his head. He must have hit his head hard on the floor. So we called ER and they did CT Scan but found nothing. Since then the same incidence occurred again on July23rd this time he didn't pass out. So we spoke to the family doctor and he advised to go to Neurosurgeon. When we saw neurosurgeon she asked to get MRI done. We found in the MRI that he either has cavernous malformation or AVM. So we went to see specialist at John Hopkins hospital he advise to get Angiogram done. Although the doc at John Hopkins did mention he had something in the front lobe on the right side. He is also having some hearing problems even after getting ear wax out. So right now we don't have any symptoms waiting for Angiogram which is schedule for Sept 20.
I wanted to know what happens next if they diagnose something?
Any help would be greatly appreciated.
Thank you Paul for sharing your experience. My husband is getting a little frustrated because he’s not improving but it has only been 11 days since his AVM ruptured. He is scheduled for speech therapy so hopefully he will do as well as you. Good luck
Hi Pippa. Thanks for your response. I hope Victor continues to improve. I know it’s early days but I have found strength and resolve I never knew I had. I suspect you did, too. I’ve started focusing on the positives (like Victor working). I actually like the music I now listen to and the different food I eat. Bob is getting a bit frustrated over his cognitive impairment but he is scheduled for speech therapy. Meanwhile we wait before we explore the options available. Don’t forget to take care of yourself
Hi Swami Jim. If I’m learning anything it’s to always look for the silver lining in any cloud. I got away from classical years ago so it’s good to reconnect. It’s soothing to mind and spirit.
Hi Ash. Thanks for your reply. It must have been very scary for you and I understand how the unknown and the waiting makes you feel. In my husbands case, his AVM ruptured so it was diagnosed in the ICU after a CT scan and cerebral angiogram. Because his ruptured we must wait until the blood in his brain is reabsorbed and the swelling goes down before we explore our options. But, as I understand it, there are 3 options depending upon location and severity. 1- targeted radiation 2 - embolism ((basically plugging it up) 3- resection (surgical removal which oftentimes involves embolism first). Good luck Ash. Keep me posted.