Brain AVM rebleed

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!

2 Likes

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!!

4 Likes

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?!

1 Like

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.

2 Likes

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

2 Likes

Can you do embolization?

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.

6 Likes

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!

4 Likes

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:

4 Likes

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!

2 Likes

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

2 Likes

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.

2 Likes

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:

1 Like

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.

4 Likes

Children heal for years. I have often heard that the brain is finished developing at age 25. I was 16 when I had my bleed and craniotomy. When the physical and occupational therapists told my Mom they couldn’t do anything more for me, she replied-“her therapy will be finished when SHE says it’s finished”. I continued with my therapy for another year and made more improvements during that year. I got rid of my cane soon after and my leg brace a year after that. Don’t give up. Grit and determination go a long way in recovering from AVM’s God Bless

2 Likes

Thanks for your message. I’m wondering if 1973 is your birthday year. If so I’m one year younger than you and it’s been 31/2 years since your bleed?
How have things gone for you? My daughter starts high school in September and thankfully she’s come a long way in 4 years but school is still a challenge whereas before the bleed school was easy for her.
Mostly she gets tired so quickly so can’t maintain working in school for hours and hours.
We do worry about her ability to be independent in the future.
Thanks again,
Allison

Good luck to you and your daughter!! Here is my re-bleed story: Just Had a Second Bleed Last Month

1973 is the year of my bleed. My neurosurgeon was Dr. Caram, who is now deceased.
I am now 64(still here). I was 16 in 1973 when my AVM ruptured.I was scared to death. I was lucky and lived to tell the tale. Hard work and determination helped get back my right side. It isn’t perfect, but it works. I have a few headaches but found a neurologist who can control them. I live in Houston, Texas. I developed an autoimmune disease in 1991 which greatly affected my vision. With the grace of God and great specialists I was able to save my vision. It has been a long, crooked road. For the most part I am doing well. I certainly cannot complain with the Covid around.
Good luck and God Bless

I needed a way to record lectures in high school but it was not available. Anything using fine motor skills can wear you out. Can she go for fewer classes? Maybe get the basics out of the way and rest more? Just a thought.

Hi Garmeow

I’m sorry to hear of your daughter

One thing I will say like others have said, is a lot of the brain doesn’t stop developing until at least 25 and your daughter has youth on her side which is a very good thing

I wish you and her the best :slight_smile:

1 Like

God Bless your daughter’s FUTURE!

1 Like