My boyfriend’s AVM in right temporal lobe ruptured recently. He is still in ICU still. I’m wondering if anyone can share their or their loved one’s recovery story. It had been 1 week since the rupture & surgery. AVM completely removed. Still drainage in his brain. It seems like he can see & he talks but doesn’t really recognize people yet. He is 27. If anyone can share, that would be wonderful. So far his progress seems pretty good.
It is tragic that he is so young, yet at the same time, youth he has on his side and because of that he will more easily reoover. I had my first hemorrhage when I was almost 15 years old. I was in a coma, in ICU and came home eventually to find my world turned upside down. I had to relarn almost everything and the whole thing still seems like a dream, or better yet, a nightmare. That was 40 years ago. Since that first episode and the revelation that I had an AVM, I have had 18 bleeds. My whole entire 20's I was sick and learning over and over again to walk. Because of all this, I married at age 32 but chose not to have children. Hard enough to raise myself, let alone kids! Two years ago, the stubborn AVM that has taken so much from me, reared it's ugly head again. This time, the inoperable could now be operated on. I had no choice and had developed a blood clot from the AVM leaking on my brain stem. At UCLA they were able to remove the clot and the AVM that for 38 years was inoperable. I am still recovering and will be forever, I feel. To look at me, you would never know just how the world looks through my eyes. I only know how much easier it was to recover in my twenties that now. That doesn't mean it's easy. Choose what is right for you. Recovery is a long road and when friends find that out, they often hit the road. That was so hard for me. Worse would be to have someone stay around that can't deal with it. I was so afraid to marry, fearing this illness would arise. After years of boyfriends that spilt when they find out you face challenges, I got a keeper. My husband is by my side every steo of the way and I am sure he thought this was all behind me.
I did have proton radiation that saved my life until technology got to where it is today. Good luck to you guys and your boyfriends road to recovery.
Thank you for sharing. I definitely understand what you mean about friends leaving you. I lost my mom due to cancer a few years ago. I found that many friends sort of disappeared during that time. A few of them told me that they didn’t know how to handle it or how to be there so they just stepped away. It’s hard for some people, for many to deal with illness. I’ve heard countless stories of partners leaving or cheating on their partner who had cancer. So disheartening…
But, I always think they don’t deserve the other person & one day the person with cancer will find someone with the strength & love to stick with them. I’m glad to hear that you found a keeper
If you don’t mind, where was your AVM and what challenges did you face post op?
Oh my…one week out from rupture and surgery is not very long. However, I am sure it feels like an eternity. The brain can heal but it does so slowly.
Every AVM is different so every recovery is also different. So many factors are involved in the process. Size and location of the AVM…how long did he go with out medical help etc.
You may wish to click on this link and read some of the stories…http://www.avmsurvivors.org/forum/topics/success-stories
There are well over 6000 survivors on this site.
I would say it took 30-45 minutes before ambulance came to help. He had to be transferred to another hospital to get surgery & that was 2-3 hours later. It’s been so terrifying. He’s been able to speak & move limbs (AVM removed completely from right temporal) but his words & responses sometimes don’t make sense. He doesn’t seem to really follow commands but tonight he was able to give a thumbs up sign…
Also, I’m not sure he recognizes me. Whenever I or someone else asks him he says no but he does holds my hand & no one else’s. And he says things to me that he only used to say to me and still has only said to me …
Yeah, I read that page probably 6-7 times already. I keep checking to see if any new stories. Thank you, this site has been a comfort to me.
Your understanding words mean alot. My AVM is deep in the cerebellum. My fine motor skills and coordination are affected as well as my balance due to the location. Since the 40 year saga and subsequent craniotomy, I can now, for the first time since age 15, walk on my tip toes! I walk around like Tinkerbell, I am so proud! I can't close my eyes and stand with my legs together without falling to either side, or tandem walk or stand on one foot. Who needs to anyway? My speech is worse when I'm tired, as well as my walking, balance and coordination. Since surgery I have a near total left homonymous hemionopsia and spatial difficulty. I can't drive anymore and am often confused. It's real hard being outside and in unfamiliar surroundings. Eating and using utensils is a nightmare of it's own! It's just difficult to coordinate it all. A happy day is when I hit the toothbrush with the toothpaste, my husband cuts my food for me, I only drop a few curlers and can stay home! All this is so not me. I like to be on the go and am trying to ajust. I am startled real easily, and am told it's because I don't see what's coming. A sudden noise alarms me. The other day I was standing in my own laundry room and didn't know where I was! I have a short term memory loss and dream of places I lived in long ago, nothing within the last decade. I may or may not remember telling you all of this and I bet you're sorry you asked! Truly, the fact that I am alive is nothing short of many miracles. I spent 10 hour days in rehab for brain injuries and still go to a rehab andd support group.
I am so sorry to hear of your loss. It is when you need friends the most and to find out they can't cope, or whatever they say, is so, so hard. I lost my dad to a stoke, of all things, 13 years ago. My best girlfriend never knew that kind of pain, loss, anguish and was not there for me. It was hard to have a friend you were so close with and when you needed her most, she just didn't get it. When I got sick and was 15 years old, my best friend just thought at a certain point enough was enough and she wasn't hanging around a sicky and off she went. I get being 15 and all, but.....stil. It is reassuring to know someone out there knows about how disheartening this feels. This time around, just like always, I am blessed to still have mom, although I feel like since she doesn't see me 24/7 , that she and my sister don't really know my challenges. A nurse said it perfectly..." Susan, I just wish everyone could put on a pair of glasses and see the world as it looks to you." That would help me out. I never thought of this before, but you said that it requires strength and love to stick around. I never thought of strength, but without that, love just isn't enough. Very well put. I can tell you this much. Sounds like your mom was awfully lucky to have you in her corner. Bye new friend!
I have a temporal lobe AVM I am still fighting it today!! They told me its graded a 5 which is the worst it can be graded. I went through gamma knife and was fine until 6 mths in and then it went to hell. I hospitalized for about a year and then I stayed for rehab for another 6 weeks. I suffered 3 strokes brain bleed and Brain swollen ( One of the reasons they kept me in ICU). Its hard it is I am now not able to use my right arm and barely use my right leg. They found my AVM when I was 22 and have been fighting it ever since im 26 now still have a large chunk of it left.
PoonElle..You are a wonderful girlfriend that found this Network for support! It will take time, but he will get better. Thankfully, he is now AVM Free! Stay Strong and Positive!
This may be helpful for you to read: http://www.avmsurvivors.org/forum/topics/what-brain-injury-survivors-want-you-to-know-re-post
I know you are going through tough times. That's what my wife told me when I had my surgery. She was 6 months pregnant and didn't even notice pregnancy pains with all the work and worry she had to do. Then, when she got pregnant with the other kids, she notice pregnancy a lot more.
Your boyfriend is already doing better than me. I was in a coma for a week after the operation. When I came out, I didn't even remember my wife. I asked for my parents and they told me I should ask for my wife. I still have to ask for forgiveness on that one today and it's been 24 years since my operation.
Since the operation, we've had 3 kids. The oldest, my daughter, is 24 and married. The other two are boys who are young and slim and a lot taller than me. While life has been far from perfect and I've learned there is no such thing as 100% recovery, we're still here.
So, take a few deep breathes and hang in there. It's gonna be a rough ride for awhile.
Thank you for sharing. Where was your AVM? How long until you remembered your wife? Same here, boyfriend’s doesn’t remember me… Doesn’t remember most people. Poor guy… He’s gets pretty emotional when he thinks about how he doesn’t know or remember people. Life has been tough for me for many years; in fact, I was just thinking how life was finally getting better, no more curve balls. I had to care for my mom when she had cancer & later when she was approaching end of life but I think that and any other hardships have helped to prepare me for today. I’ll be hanging on…
I’m sadden to hear your struggles but I admire your strength & ability to keep fighting. May you win against the evil AVM! Will your right arm & leg be able to be used with more therapy or…? Regardless, you’re in my prayers.
Hi, My AVM ruptured jan 31, 2012 and I wrote about it for friends, business colleagues , send me your email and I will send you the document. I made a great recovery back to work doing great, docs said the way I approached it made a big difference in how well I recovered. regards, sherry, email: ■■■■■■■■■■■■■■■■■■■■■■, ph# 973-■■■■■■■■.
I am sorry to here about your boyfriend. I almost lost my husband to his first AVM 4 years ago. Since then he has had four surgeries and during the last one he had a stroke. He still has two fistulas that they can not get to but we haven't done anything recently being they are so very deep. After his stroke and all of the embolization that took place, he was unable to walk and lost most of his speech. Everyone is different so I can only speak for my husband and I. We are both "fighters" I guess. He was a Marine and then a police officer until this happened. It has taken a lot of strength and effort but he has recovered in many ways over the past four years and can walk and his speech is better. His life isn't easy especially since he had to retire early. BUT we take one day at a time and that is the very best advice I can give you. First, know that the brain does recover. I am hoping your boyfriend does start remembering and recognizing you and his family soon. Second, only your truest friends will stand by you and it's unfortunate but it's very hard for people to handle. Third, take care of yourself and you will be able to take better care in helping him. Finally, your boyfriends is going to go through major changes through his recovery. I can say that my husband is not the man I married six years ago. It has been very difficult. His emotions and personality have changed but that is all part of it. Know that this has nothing to do with you but with what has happened. He will be down, angry, very confused, and many other things throughout this journey. Your life together will be different but I have realized that I am not going to consider it bad but I have remained positive. I love my husband more for what he has been through and am committed to surviving and growing with him throughout this ordeal that truly has happened to both of us (I now realize). We don't ride motorcycles any more, ride our horses, or do many active things. BUT we do find happiness in small things. We appreciate our time together and I still am working in a very demanding and stressful job. He is now my "house husband" and takes great pride in this being he can not work. I also know that someday I will do the things myself that we can no longer enjoy together (riding my motorcycle, etc.) It just isn't what I want right now. If you are a care giver "type" of person in general this will be very tough but you have to again, take care of your self and stay strong for him. My great auntie gave me the best advice when this first happened. She said do not cry in front of your husband. Cry to your friends but always be strong for him! That really helped me out. When I spent many hours with him at the hospital I focused on what I could do, researched and helped take care of him. I was able (through my profession) to be apart of his physical therapy and it was very hard and both of us felt like giving up at times but he was final able to walk with a walker and they let us leave the hospital. We also couldn't leave until I could help him off of the floor and that was a challenge! BUT we did it together. I will be looking to hear how you and your boyfriend are doing. Thinking of you and sending you "woman power".
It will take time to get things back on track but its something he will achieve in time...I had a right frontal AVM rupture & had to undergo surgery for removal in 2011...i will never be the same but im grateful for what i have and life itself...sending prayers your way & God bless.
I went thru a lot when my avm ruptured after the second embolization 2 days before surgery and I am a fighter, I am the bread winner, I've always had a career, work in nyc, was traveling to London, brazil, etc for business and got home from a bus trip in 2011 and all this avm stuff started to unfold. I wrote about it so I could easily explain to bus colleagues and recruiters why I couldn't work for a year. I don't know if / can attach the file. but looks like its thereou can call me on 973-■■■■■■■■ if you want to talk. Its a tough road of recovery and no one can possibly understand except someone who's been thru it! my husband & kids did great but we had our fights, I hated having to be taken care of!!