Hello, thank you so much. I am trying my best to care for me. I know he needs me the most now.
Best wishes,
Lyannete
Yes it does. It will be a long road.
Hello Tim. I am so sorry to hear! What an incredibly crazy thing those avms are. That is a great analogy. Definitely a lot of patience.
Best,
Lyannete
Hello. Thank you so much for sharing so much detail. It truly means a lot. It was the lower right portion of the cerebellum. Not sure exact details. I can definitely get them.
As far as seizures, he has not had any. Clonazepam so far going okay. Honestly I do not think it has improved the nausea. His nauseas seem to be more centralized due to the injury. That is one big thing setting him back at the moment. I know the cognitive and short term memory will take a while and that is what is so scary to me. One day at a time and for being 9 weeks today, I think this is all great progress.
Love to stay in touch,
Lyannete
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Dear Lyannete,
I feel so bad that you and your husband have to go through all this. I believe that the family members of the patients must suffer more.
As a patient, I am always afraid that I will gradually lose my personality during treatment.
And because of this, I worry that I will lose my partnerās love.
The doctor wants us to maintain positive thinking as much as possible, because any treatment and recovery will take a long time.
I believe your husband will recover. He is so young and healthy. But your mental health also needs the same support.
Stay in touch and take care. Hope everything will get better soon.
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Hi @Lyannete1991 I did have a chance to ask my husband if I was repeating words that he said or the drs etc at first and he said no . But I was barely speaking in the beginning. I believe Cerebellum damage can impact Besides muscle movement, new discoveries show the cerebellum is crucial in several other functions, including:
- Cognition
- Language learning
- Balance and equilibrium
- Eye movement
- Reflexes
My area was basal ganglia and thalamus - even so I still have some aphasia 10 years later. Also my stroke dr told us he expected a full recovery but never told me until afterward how long he thought it was going to take. I recovered quicker than he thought - he eventually told me he thought it was going to take me 3 years to recover from my CVST stroke which was 5 clots in my brain even before the DAVF was later found. I would say it was about 13 months and probably would of been quicker but then I had the second stroke during my 1st embolism which even though I recovered quickly where I could move and talk again the next day- I felt a lot more pain afterwards.
I did listen to my body and once I could do PT by myself we even bought a pilates machine for home to work on my core to help with my balance. My husband would film my PT so I could watch it and then remind myself at home what I was supposed to do.
I also have a bunch of cooling gel packs and my pt cut a bunch of those stretchy bands for me to do at home . I was so amazed and shocked how tired I was at first doing the PT.
For me even though I am considered recovered I still sometimes fall and work on my balance.
Angela
I had a really interesting discussion last year with my child who is studying neuroscience in college. He was really interested in all the details of what my issues were as I was learning how to walk again. āRelearning to walkā had always sounded to me like youād have to learn really basic movements, like how to flex your ankle and knee and so forth. But that wasnāt my problem at all. My legs āknewā what to do. But knowing didnāt translate to doing. Once I started with one foot, the next knew what to do, more or less. But I couldnāt do it unconsciously, or maybe a better description is at a higher lever.
Iād think, āokay, I want to walk two steps forward. Iām going to start with my right foot, and Iāll have to swing my left hand forward too, and Iāll have to shift my weight onto my left foot first to move my right leg forward.ā Once my leg and arm swung forward, it was like a self-propelled lawn mower, I could keep going as long as I could stay upright (which was, to be honest, only a second or two for way too long). But I couldnāt start moving without going through a sort of checklist. If I just intended to ātake a step forwardā, nothing would happen.
My kid said this was because the cerebellum is also very involved in planning movements. Your brain says, hey, lets go over there, and the cerebellum coordinates all the automatic and reflexive actions you need to do to get there. Itās a little like learning to drive. At first you have to consciously think about looking in the mirrors, or moving your foot back and forth between the brake and the accelerator, and so on. But with some practice it all becomes automatic, and you are thinking on the level of where you are headed and what route you need to get there, and not where to put your feet.
Of course, later on at least I was having the opposite problem. Iād forget that I needed to slow down and think about my balance and where I was in space. After I was back in my house, I would fall all the time into the wall next to my bed (itās a narrow space, so usually Iād bounce back onto the bed, not fall onto the floor, so not as scary as it sounds). Besides the times I was just getting up out of bed, this would happen all the time when I was getting dressed. The motions to put on pants are so automatic, and if I let my body work on autopilot, Iād get in trouble. Unfortunately, two things that were guaranteed to tip me over were putting all my weight on one foot, and crossing my center line. If I didnāt remember to stop myself from doing those things, Iād fall. I slammed my left shoulder into that wall so many times that for about two years I couldnāt raise my left arm past my shoulder.
Itās amazing how many things go into taking a few steps. Initiation, planning, muscle movement, balance, feedback from visual/proprioceptive/vestibular senses, coordination.
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P & L, PRAYERS to BOTH of you two! Try to always remember āIn good time & bad timesā & āā¦until death does you part.ā L, it might be a very hard road for you two, but remember, it will be HARDER on your husband, so fight this battle WITH him! PRAY your heart out, & look for little signs from God that might help you, too. So, so many people think they have their whole life plan is SET, but since I know, MYSELF, one instant, everything can be taken away. BE BRAVE, BE STRONG & tell him DO NOT EVER GIVE UP & ASK GOD FOR HELP, too!
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Dear JoeY,
It is a good thing you came to this forum.
I am so sorry for what you are experiencing - even if I was the one with the ruptured avm when it occured to me.
For the moment, it is impossible to predict the extend of the damage to her brain / and her ability to recover. However, it is likely that physicians have an idea regarding the location / the intensity of the bleed
The next months / years are probably going to be tough but be sure there is hope and her young age will help with the healing
@Joe from what I can tell āintracerebralā means within the cerebrum rather than within the cerebellum, so a brain bleed (not necessarily specific to the cerebellum).
Oh okay thank you for letting me know, I didnāt think I was right to be honest I as sort of just guessing. But thank you for letting me know 
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Iāve just looked and the cerebrum is the upper part of the brain, above the cerebellum. Anyway, itās very much the same as other brain AVM people here.
Okay thank you so much for doing that, do you know if that means itāll affect/effect the brain in the same way? Sorry for asking so many questions
Hello there. I was reading thru some things today. I havent posted anything for awhile. My heart stopped when i read your post. Im sure youve posted more but i wanted to answer u real quick. What he went thru sounds so much like me. I had a severe headache that felt like a knife going down the top of my head. Thru my brain! It was horrible. I immeadiately started vomiting and was pretty much gone. I had enough time to tell my husband i needed help and i think im having a stroke. I went by ambulance to the hospital locally. They had to life flight me about 150 miles to a different hospital saying i probably wasnt going to make it. They put me in a coma and i had a drain to release the pressure. I was out for about a week or so. My bleed was also in my cerebellum. I was 66. Its absolutely a miracle that we have been given the brains we have. They do get better. Im not a doctor but it seems if u can make it past the bleed and stroke the drs are miracle workers. I had 3 embolizations, mostly to prepare for surgery so as not to lose alot of blood. So that was a blessing for me. I had the best surgeon. Then in dec 2021 i had a 14 hr craineotomy. It went very well. I woke up able to do everything. They let me go home in 3 days!! Im still recovering some. Im still dizzy. I wanted to say they put me of zofran for vomiting and nausea 4 times a day. I couldnt hold anything down when i had my stroke. It took awhile to get the zofran and eating down right. But im there. I take 1 a day now. Just in the morning when i get up and around. I still have some dizziness. Because of where mine was in the vermis, my surgeon said i may be dizzy awhile. The vermis is where we get seasick, or drunk, or car sick, so they did a number on that when they took the AVM out. Im hoping it will all heal in time. If i get too tired it can be bad too. If u read thru as much as u can, people in the worst way possible get better. I have a friend that had a stroke. She was blind and they said she had brain damage. Just less than 6 mths later she isnt brain damaged and she can see again little by little. Im very hopeful for your young hubby. I was in the hospital 1 mth. Who would ever think this could happen because of some veins. Ill be thinking of u both. Keep us posted on his progressš¤
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Hello Debbie! Thank you so much for sharing your story! Wow, I had chills reading your story and how similar it was to that of my husbands. I am happy to share that my husband has made an amazing recovery. He was in the hospital a little under 3 months. After he had 8 months of intense physical, speech and occupational therapy. He is now back to working full time and exercising. He still suffers on issues with his balance. He takes Zofran once a day in the mornings, the days he works out. The doctors and therapists, were miracle workers. My husband was not given much hope at first and to see him walking our 65lb husky, going up our stairs, and being able to be an active partner in the house is nothing short of a miracle. I want to share to everyone that there is hope, things get better, it is a lot of hard work, tedious moments but recovery is achievable.
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Joey, Keep the faith and keep being strong. After the swelling went down, it was about 3 weeks for my husband to start " waking up" some days were more than others. some moments it was just his leg moving, others were grabbing my hand. When he āwoke upā he was not able to talk but he knew I was there and he would listen. Make sure you talk to her. she can hear you! tell her she is loved, she is pushing for her life and for you! Keep us posted.
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Oh my goodness! That is wonderful news. I shouldve looked for a date but thats ok. Ive not been on this site for awhile. Im so so happy for you both. It is so amazing how we can recover. This makes my day. I know the dizzies! But hes working! Hes excercising! I have a hard time with that cause i feel like i have the flu when i push for that. But ill get there. I walk in the stores as much as i can and i do laundry and dishes and some gardening. It all adds up. Glad things are going well for you. Tell him to keep up the good work!!
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Welcome to the family and sorry to hear about your husband.
I had headaches after heavy weights one day that resulted in a CT scan to discover I had an AVM at the same age as your husbandā¦ I suffered a brain hemorrhage a month later & required surgery to remove itā¦ recovery is a slow process that takes time but I believe he will make it out of this in due course.
Thereās light at the end of the tunnel & I know itās difficult now but just know things will get better each day over timeā¦ God bless!
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