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AVM Survivors Network

17 year old brother. Prom night disaster!


#1

Today is Weds May 10th 2017 last Saturday we found my little brother had a AVM in his postural frontal lobe near the speech and language on the left side. He’s had a surgery which went well. He is completely numb on his right side and he cant talk, although his face is fairly symmetrical. What can I do to stimulate his brain? How common is it to get movement back?? Does anyone ever come 100% back to normal? I’m up in Maine. Please reply


#2

It will take some time for him to come back. I was in the hospital for 2 months before I was able to come back home. But even after my surgeries still had every type of therapy for the next couple months. My speech was also injured but it was in a different way. It was more of finding the right words to say. As far as my physical therapy I was numb on my right side for a year. I also had problems with my right foot walking it would walk flat. Even to this day if I’m standing on just my right leg it’s not that balanced and when jogging right foot is flat. Hope the best for you and your little brother.


#3

Duncan, we’re so sorry to hear about your brother’s AVM. You’ve come to the right place: this community is populated with people who have experience with what you and your family are going through. People will reach out, but it may not happen in the next few minutes.

Why not do another post, and ask some more specific questions? That will keep this thread near the top of the activity feed, and will encourage more people to answer.

I will say this: the founder of the Ben’s Friends network of over thirty communities for people with rare diseases and conditions had a ruptured brain AVM himself. It was that AVM, and his recovery, which inspired what you see here today.

Hang in there Duncan, and hang out here.

Seenie from Moderator Support.


#4

thank you so much really do you mind me asking how old you are?? and you said you jogging?? thats amazing were you completely paralyzed on one side?


#5

do you know where is a good location???


#6

Was completely paralyzed on my right side for a month but it came back after the surgeries and lots of therapy. I was 10 years old when it happend. I’m 27 now but the years 2000 to 2002 were a crazy ride.


#7

You should have hope. The next 6 months are very important keep a strong positive attitude knowing that the younger someone is, the better the chance for a more complete recovery. I know that this is very important to people new to this. As someone who has a couple of years in, I can tell you attitude is everything.


#8

Play his favorite music for him


#9

It is very common to get some movement back. Surprisingly yes many make a 100% recovery. You won’t find many here as they need less support.


#10

jesus than you so much i know everyone is different but i haven’t seen to many happy stories here, and its hard cause i know everyones experience is so variable on where they had there avm and how big it was. hes listening to music and im so proud of him hes totally in there even kinda said no. im just so concerned about his side, the rehab made it seem like it really important we see something from that side within two weeks and sunday will mark week one. thank you is there anything i can do to help simulate him that helped anyone else?


#11

Jesus than you so much i know everyone is different but i haven’t seen to many happy stories here, and its hard cause i know everyones experience is so variable on where they had there avm and how big it was. hes listening to music and im so proud of him hes totally in there even kinda said no. im just so concerned about his side, the rehab made it seem like it really important we see something from that side within two weeks and sunday will mark week one. thank you is there anything i can do to help simulate him that helped anyone else?hes 17 i hope thats plenty young thank you so much. you were paralyzed for a month? before getting any sort of reaction from that side?


#12

thank you so much


#13

I started as left side partial paralysis. There were many things I have tried. Acupuncture, hyperbaric chamber, tens unit, CBD oil. All with some but not 100% gain. The most effective was time + physical therapy. There’s probably more out there that I haven’t heard of. In time, I think you’ll find that getting him back to where he was is less important than enjoying the fact that he’s still here. In the meantime take encouragement in discovering together where the limits are and where you can push them. For example, I may not be able to hop anymore, but we don’t have to wait in line to ride roller coasters now.


#14

you just made me laugh so hard. :3 you can cut lines now? now that is a victory. thank you so much was this after you surgery? my little brother plays guitar i want to help him get that back. have you heard of the Constraint Therapy they do in Alabama or Ipsihand or low dose psilocybin mushrooms? sorry for all the questions thank you so much hes in such high spirits i want to give him everything i can


#15

hi Duncan, your brother is in my prayers! I’m an AVM survivor myself and like your brother my AVM was in my brain. While I can’t promise you he’ll be 100% back to normal, I can give you a brighter tunnel by saying it’s possible. After my surgery I had similar symptoms like your brother. They prepped my parents to being able to take care of a handicapped child. I was an athlete in highschool and they warned me that after surgery that chapter would close. However, thanks to persistent and determination. I live life as I normally did before my rupture. Give it time, the brain is an amazing thing that’ll heal by itself. I’ll be thinking about him and wishing him a speedy, full recovery.


#16

Hello Duncan,

Every AVM case is a little different so I cannot answer your questions with complete certainly. The surgeon will likely have told you your brother’s prognosis. I can tell you that 17 is a fairly young age for an AVM. My AVM was in the same place. He is in the very, very early part of his recovery process. If he is anything like me (and I had my AVM bleed at the ago of 37) his speech will gradually return, as well has his ability to write and think clearly.

Your family should try to get him into a top rehabilitation facility. With physical therapy, speech therapy, cognitive therapy, occupational therapy, and psychotherapy a lot can be accomplished. You have to remember that it takes a long time for the brain to adjust from such a trauma. I found that a speech group can be extremely beneficial to a stroke survivor. Unusual bonds of friendship can be formed and I just think it’s helpful to be in a group of people who are all going through the same thing.

My AVM bleed was on the left parietal lobe that affects speech and language. It is very important to have family support and I truly understand your desire to “fix” him. At the beginning, though, I think its best for the doctors and professional therapists to undertake the initial steps. But you can provide emotional support, follow his progress, and ask the professionals for advice for further steps.

To my knowledge he will never be exactly the way he was before the incident. There are several psychological stages. At first there will be denial. He will think that he can just pick up his life right where he left off. Little by little, he will learn that certain things (like that feeling of numbness on one side) will never go away completely. He may also have certain proprioception deficits that are permanent. But, over time, he will find a “new normal.”

I tried the hyperbaric chamber. Although most neurologists don’t think it has any benefits they also think that it can’t hurt to try (except in the pocketbook because most insurance won’t pay for it). I found it helped with “brain fog.” I also tried “brain supplements,” like Vinpocetine. Did they help? I don’t know. Maybe. I’m glad I tried.

Eventually, I do agree that guitar lessons can be very beneficial. He has problems with his right side. So his control of is left hand (the fretting hand) will be normal. But there will still be numbness on the right side. But guitar doesn’t require the use of your right pinky. Sometimes you need to use your ring finger and that may be a little tricky if he wants to play fingerstyle one day. But for strumming and singing it will be fine. Playing guitar does wonders to coordinate the left and right sides of the brain, especially if he tries to sing while he plays. He will probably have fatigue. So tell him to practice small sections of the music at a time and to take frequent breaks.

Also boxing - never on an actually opponent! But with a trainer. It improves strength, reflexes, cardio fitness, and confidence. It helps with footwork and coordination. Get boxing gloves and have the trainer use the punch mitts.

Some people suggest that doing games and puzzles help. I found them to be mostly frustrating. But he may be different. I do think that playing video games can improve hand-eye coordination and playing a two-player game is a great activity to enjoy with a big brother. But he might not be ready for that for some time.

Stay strong!


#17

Duncan,
I’m keeping you, your brother and entire family in my prayers. My son had a large AVM rupture [Left temporal] in September of 2014, he was 23 years old at the time, he underwent an emergency craniotomy to relieve the pressure and was very lucky to survive. After he spent a week in a medically induced coma he spent another week in the hospital and then had surgery to remove the AVM then three weeks at in-patient rehab then 1.5 years of out patient speech therapy.

Why so much detail? Because in September of 2016, two years to the day following his rupture, my son returned to work as an auditor! The first thing we learned is that “brain is time” it’s a slow process and everyone recovers at their own rate. Second: the younger someone is the better chance they have at recovery. Third: offer support and stay patient its a long road and he’ll need you there. Fourth: Never underestimate the power of prayer. My son’s major problem was Aphasia, his first words were incoherent and then he did nothing but curse then he used the wrong words all the time but slowly over time and constant therapy he’s made improvements. He still has a tough time finding words and his work sometimes confuses him but he battles through it. This sight has proven invaluable for me, I came here shortly after my son’s rupture and found so much support and suggestions and have in turn found that I can too offer support. Please feel free to reach out to me and/or check out some of my posts over time [they may help with questions you have] the folks here are wonderful. Best wishes to you and your brother.


#18

Welcome Duncan!
We will pray for the best possible outcome. My AVM ruptured in March of 2016. I am 49 now, and it bled between vision and language but very deep in the left occipital lobe so no surgery. In fact I will be having stereotactic radio surgery in a few weeks to try to obliterate it. I have numbness on my whole right side except my face, but although it’s numb, it is fully functional. It wasn’t originally, and I searched for words a lot when it first happened.
My recovery I believe was pretty successful so far and I hope it continues that way bc my kids are 13, Ty my son…and Haley my daughter who is 10. I slept A LOT… I mean a lot a lot. Don’t be surprised, I think that allows the brain to heal faster. I couldn’t walk very well at first but I can jog now, and I have my license back, so other than some financial difficulties that I wasn’t planning for with this, (because work is tough especially in the beginning,) I would say as long as there is positivity, there is so much possible.
Remember, small steps and let him sleep if he’s :sleeping: tired.
Smile, laugh, and have faith. Feel blessed, there is a great life ahead, just take your time :slight_smile:

-Lorna


#19

Thank you so much do you mind me asking if you were hemiplegic as well? How old you were? He just moved hi leg a lil


#20

Thank you so much and as for boxing I’m a fighter

Duncan The Highlander

Thank you so much for taking the time to help me with my brother