Brain AVM rebleed

Symptoms & Treatment
#1

Hello all,

My 13 year old daughter had her AVM bleed in March 2020, she recovered from that but her AVM is inoperable so we were waiting for radiation therapy. Unfortunately her AVM bleed again in October 2020 and this time with more severe brain damage affecting her mobility. Can anyone share with me if you had multiple bleeds and how that recovery journey looks like?

Also we are in Vancouver, BC, but it seems to take forever to get the radiation therapy scheduled. We were just told to keep waiting. Does anyone have any similar experience or advice?

Thank you!

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#2

So sorry to hear

Unfortunately, there isn’t much else to what you have going on - aside from, get the best possible medical team working with you & her - but, I have no idea on how it’s handled in CA

This year also I suffered a bleed - according to my neuro team it was one of many over the years - I never came in till the rupture this year

No one has a true way of knowing how I survived this long without a severe issue - till this year

My dAVF is also quite inoperable. My neuro team here in US seemed to be very embolization happy - which worked out very well for me

My heart is with u - hearing this about kids really hits me the most

GL :slight_smile:

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#3

Thank you Mike for your reply! Wishing you a strong and safe year in 2021!

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#4

Welcome to our community, o sorry to hear about your daughter. We have a few forum members who have had multiple bleeds, I was fortunate to only have one. I had Gamma Knife 6 months after my bleed but did a bunch of healing and exams in there, another MRI, another angio after the blood had cleared. It was all to help make the best possible decision.

I am located near Winnipeg, our Heath Science Centre here was the first in Canada to use Gamma Knife and the neuro team here is simply excellent. They do consults for other provinces, usually more so the ones that don’t have gamma. I’m not sure how it would work province t province but might be worth looking into. Google Dr. Anthony Kaufmann, Winnipeg HSC, he was great and the staff there were superb.

I hope you are able to get things moving, thinking of you and your daughter. Take Care, John.

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#5

I had my AVM rupture when I was 10. My first surgery went okay but it was a long recovery. I kept having seizures constantly after the first surgery. They weren’t the big type of seizures but wouldn’t be responsive for a little bit or sometimes my vision would get a little crazy. I was then taken to St.Louis children’s hospital for some more test and they found 3 more blood clots from the rupture. They were really small but the damaged tissue was causing my seizures. The reason it was tricky on me was growing because I was a little kid. So they did 3 more surgeries and one of the surgeries I started to bleed again. They stopped the bleeding and later on got it out. Was a little scary and it damaged a little bit more of my right peripheral vision. After the surgeries went 3 months without a seizure so they tried to take me of my pills but had a seizure. They figured it’s because of damage from the rupture. So as long as I’m on my pills I’m fine have gone over 10 years without a seizure and even drive. Best of luck for you and your daughter.

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#6

Thank you for sharing your story! You are a fighter and I wish you to remain strong and have joy and you everyday!

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#7

Hi @garmeow! I’m very sorry for what you both are going through. I bled in 2000 from one AVM at 18. I bled that summer in the hospital from a second AVM. Then in 2010 I experienced a third bleed. Finally just recently the doctors at Duke University found a remnant AVM by angiogram but it had already bled at an earlier date in 2017/18.

Not sure if that helps. I have surrendered my driver’s license and contacted the department for the blind and visually impaired. I wish I had better news for you and wish you all the best!

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#8

Recovery takes time. I am 3 years in but I will assure you that the most recovery happens within the first year. It’s tough don’t get me wrong. It took alot of swearing tears and sweat to regain my mobility back it does return. On my 2nd bleed I experienced a hemorrhagic stroke and I am still stubbornly trying to regain my left hand. Thus far I can move/use my thumb with alot of effort and make my jndex finger twitch. But you want to know is mobility. Oh walking was one of my first achievements. Granted I needed an afo, walker, semiwalker, cane and loft strand crutch until I no longer needed them :slight_smile: slowly but surely. Chin up it’ll happen. It was painful for me but I kept at it. On my bad days I still rely on my wheelchair though! I can’t squat without losing my balance (I have a toddler so I wish I could squat lol!) I hope that was of some help!!

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#9

Thanks for sharing your recovery journey and giving us hope that mobility will come back. I believe that fully but also expected that is not going to be 100%.
I guess the big question is if people know what triggers a rebleed. I understand no one really knows and we are suppose to just live everyday to the fullest instead of avoiding living a normal life trying to prevent a rebleed?!

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#10

I am sorry to hear you have been through so much! Thanks for taking the time to write back and share with honesty the challenges! My prayers for you to stay strong and positive.

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#11

This exactly what I think about every day

Should I stop, slow down or what - I feel good today & I’m not stopping how I live - this is just my opinion for myself, we are all so different

This never means wreck less or anything like that

But - like right now, I’m in the high country of Arizona going to the Grand Canyon - this is the first time since my “head stuff” happened that I am in high elevation & extremely cold temps - We had a chance to take my son, so we did - made the wife drive tho . . This isn’t the time to test my driving ability on black ice.

So far so good - thank you all for posting your stories - after being here, I completely changed my thought on what strength really is

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#12

Can you do embolization?

#13

I am so sorry to hear about your daughters struggles. My daughter had 2 bleeds in 2 years, and we were told her spinal AVM was inoperable. We pursued a second opinion at Stanford Medicine, and she was able to undergo cyberknife treatment this past summer. I would highly recommend you reach out to Stanford for another opinion. She is working to regain mobility on her left side, and we are waiting to see results of her treatment…we will monitor for 3 years. I hope this helps. Prayers and hugs to your family. This is such a difficult condition to deal with. Good luck and don’t hesitate to reach out if you have any more questions. We have nothing but wonderful things to say about Stanford.

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#14

I’m no doc but I was under the understanding that after approximately 18 your developmental growth stops thereby reducing the risk of a rebleed. But, as many folks in this group bled after 18 (self included), I know that the doctors are doing a marvelous job helping so many. But as with any condition, there is always more to be done! And I am not a medical professional, doctor, nurse or otherwise. I’m just the survivor of 3 cranial bleeds. With the added strain of CoVid19 on our medical infrastructure, I hope that the vast population of brain injury survivors are not overlooked. I pray for them all and hope you all have a better 2021! Blessings as we all continue!

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#15

3 bleeds! That’s quite many! I am glad you are with us and hope and pray for the best in your treatment and care going forward in the future! Wishing you and yours a happier New Year! :blush::sparkler::fireworks:

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#16

Welcome to the family and sorry to hear about your daughter… please feel free to reach out to the members here as we can offer so much support in these trying times… just know there is light at the end of the tunnel and it is a hard journey but she will get there… God bless!

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#17

Hi,
I can relate to a rebleed which drastically affected my mobility. I’m into my third year now and still improving. I’m not independent in any way so always with company who help me with my walking when tired. My brain is still unsettled as it judders about which I look at positively as still healing. I’m much older than your daughter and I do believe her youth will play a big positive part in her recovery. She will have the enthusiasm and determination which so many seem to lose. Unfortunately it takes time but it does improve. If I always looked to myself with a half empty glass I would be in a much worse a place. Can I ask which area of brain was effected? Mine was cerebellum which I believe is responsible for our mobility. No one knows how each of us will heal though I do believe much more positive outcomes are going to happen towards your daughters recovery with mobility. Jo

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#18

Thank you for sharing and my thoughts are with you as well as you continue to walk everyday with positive spirit and hope. I understand it takes time and I was encouraged listening to the audiobook “A stroke of insight” about a doctor recovering from AVM. The key message is that don’t listen to what the doc said your recovery limit is, just don’t give up and keep going. Our bodies is amazing and can heal.
My daughter’s AVM is on the left side affecting short term memory, speech and right side mobility. Her right side is waking and therapies are helping. But I was also told to start training her left hand to be the dominant hand.

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#19

Your definitely right as in don’t listen to what the Dr says about recovery time. I’m well over the suggested and still improving. As long as you keep at it with positivity, you will continue to strive forward. That’s what I believe anyway. Good luck with your daughters recovery :pray:

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#20

I’m sorry to hear about your daughter’s situation and that she has had 2 bleeds. My daughter is also 13 and will turn 14 in two weeks, but at the time of her AVM rupture she was 10. She only had one bleed but in her surgeon’s words it was catastrophic. We’re lucky that we live in a big city so an ambulance could get to us quickly. She had to have emergency surgery within hours and another surgery 18 months later to remove residual. I’m really sorry that you’re having to wait for treatment and I’m sure that Covid isn’t helping.
Anyway my comments are more about recovery. My daughter was left 100% without function in a coma after her bleed. She couldn’t breathe or eat on her own, couldn’t speak for 5 months and didn’t take steps until 8 months after. It took a very long time but she has made a truly amazing recovery. She is in grade 8 and keeping up with her peers after missing 5 months of grade 4 and a great deal of grade 5.
I honestly believe that children are capable of making progress for many years after their injury. She’s still making progress and I hope one day her balance problems will be very hard for others to notice.
So I’m sure your daughter will continue to make improvements for a long time. It’s frustrating how long it takes though. I hope you get her radiation soon. The adage about the squeaky wheel is true. Call often.

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