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AVM Survivors Network

9 year old son AVM ruptured


#1

Hello, im new to this forum and have questions. As a parent im worried about my 9 year old son who’s AVM ruptured about 8 days ago and went into emergency surgery to fix the bleeding and thankfully it was successful. What my wife and I are worried about is the affects it’s having on him currently. From what the doctors told us it happened in the part of the brain that controls the left side of his body. He says his whole left side is not numb but feels pins and needles and also feels when we touch that side of his body not as much as his right side but he does feel it. Also his speech is a little slower but he’s talking full sentences, also with the left side problem when he smiles his left side doesn’t move. I don’t know maybe we are overthinking it and need to wait but we are scared for our son. If anyone can let us know if we are being a little too anxious we would appreciate it. Obviously we want the best for our son and hate seeing him like this.


#2

Hey Sweeper,
You say your son had surgery 8 days ago and it went well. This is very good news. 8days is way too soon to be giving any great advice. The body is still in the process of adjustment, any swelling or pressure within the skull can have effects in regards to the symptoms you describe. Over thinking and being scared, imo, is pretty damn normal considering we are talking about the brain, in fact I’d be questioning why if you weren’t.
Your son will need time for things to settle. Now I say ‘time’ and nobody can say with any surety how long that ‘time’ needs to be as we all heal at differing rates. Being that your son is young that healing/adjustment process maybe quicker than for an older person, but again to be saying it will take ‘X’ time to fully recover is impossible.
Please do keep us informed of his progress and if we can give any advice or support please ask.

Merl from Moderator Support


#3

Sweeper,

It is great to have you join us. I agree with Merl, it is very early days after a bleed but that he has some feeling on the left and is doing as much as he is is pretty brilliant. He could actually be a lot worse.

This is going to be the longest journey you guys have been on. I am sure he’ll get better but it is probably going to be very, very slow. Again, as Merl says, being a youngster, he may surprise us and get well more quickly but I reckon he’s doing really well.

Let us know how he gets on. We’ll be thinking of you along the way.

Very best wishes

Richard


#4

@Sweeper26 Hello and Welcome I am so sorry about your son rupture. I am in the Bay Area and went to Stanford for my AVM which is a DAVF. Prior to mine I had an unrelated rare stroke that put me in a coma and impacted my left side. I was 43 and I could not move my left at all I could not smile either. It all came back. I am weaker on that side but I can smile and people say that they can not tell . He is young and the brain is amazing and remaps. What your son has gone through is scary and most likely painful. For me I was scared but I had hope and everyone around me knew I was a bad ass and had faith -
Be strong for your son in front of your son-
Cry and scream in your car- When my little sister got necrotizing fascitis this is what I did- You are your sons strength and he can do it. It will take time and if he is already talking full sentences this is amazing- I could barely say one word when they let me leave the hospital - its like lifting your max weight to get one word out when your brain has been through this kind of trauma. My brain felt sore and thirsty -
I am big believer your brain needs good fat to heal- Stanford thought it was going to take me 3 years to recover from the 1st stroke and I went back to work in 13 months after 3 strokes and AVM- my husband starting giving me coconut oil in my tea of coffee starting with 1tsp - then working up to 2 tsp then 3 tsp—spread throughout the day…I also craved fruit bars.
please keep us updated…


#5

I actually read Angela’s post about this back when I had my 2nd rupture post embolization and craniotomy and let me tell you I too have shocked my doctors and therapists at my fast paced improvement except I go to the extreme of mostly organic and good fats. I say mostly because if I am craving a pizza, I will eat it :+1: So basically I listen to my body if Im craving something specifically I eat that. At the beginning I craved eggs now it’s usually toast with butter. This aside from my baclofen has helped me tremendously. And obviously physical and occupational therapy ( I had speech therapy too but graduated within a month) I had pain, numbness, tingly on my left side aside from weakness. It is basically close to normal. Im walking with a loft strand crutch and Nordic poles as well as an afo for my foot drop but Im really close to the finish line! The advice of everyone in this forum has helped me so much!


#6

Oh I forgot to mention I’m 25 and 8 months into recovery so I know for sure your son will shock you all and recover WAY faster! Even if I hated hearing it, it does take time.


#7

@Teiry Grea job ! I am a firm believer in your body tells you what you need and I forgot to get myself some fruit pops today! Also drs never tell you a date for recovery. They are sly like that. My drs told me they expected a full recovery but never gave a date but later told me the 3 year mark-
Now I have a bunch of other health issues and was just talking to my primary who has been with me prior to the AVM and with me from my massive unrelated Stroke and she thankfully is in agreement with me that she thinks its related to my stroke and that is why I have not complained about the nerve pain and and dropping stuff because big picture I am walking etc. Anyway We are survivors and are bodies and minds take time to heal. Hugs everyone !


#8

Hey everyone sorry for no update, so far it’s been a busy week. So 2 days ago they moved my son from the pediatrics critical unit to the rehabilitation side of the hospital. He will be starting his rehab tommorow so we are nervous and excited at the same time. Hes still really groggy and talks slower then usual but he’s talking fully and having conversations. He’s gaining sensation on his left side day by day but still can’t move it. He also is forgetting things throughout the day, we don’t know if that’s normal? The doctors are telling us that they are excited to see his progression starting this week but we don’t know if they are saying that to keep our hopes up or they truly believe he will recuperate. I guess we are still worried, but the good news is that we are out of the PICU unit and now in rehab.


#9

This is all good progress.

I completely understand your concern and reticence as to how good his recovery will be (and it is impossible to tell at this early stage, I think) but rehab will be the key.

Wishing you all the best,

Richard


#10

Hello and welcome. From the point of the person who had a bleeding in the same part of brain i can say that everything will be more or less fine, patience and recovery are the keys. seemingly age is on your side + developing technologies.


#11

Dear Sweeper. First of all I know exactly what you are going through right now. On September 14th 2017 our then 7 year old had a brain hemohrage due to an AVM rupture. She also had left side weakness. She spent 13 days in the PICU at UCLA followed by 30 days of rehab at Children’s Hospital. Its hard to see the forest through the trees but I can assure you that things will get better. It will feel like for every 2 steps forward you are taking one back. You will have good positive days and then some crappy ones. Remember to judge his progress weekly not daily. My daughter was back in school just after xmas break with the help of no walking devices. She is now 100% autonomous. These children are so resilient and statistically bounce back faster. Looking at my daughters progress is nothing short of a miracle. At this point your child has beat the odds. Its not a matter of IF, its a matter of WHEN he will recover. My daughter is now 90% of her former self. We are still in outpatient PT, ST, and OT and still improving. Hang in there and feel free to message me with any ongoing questions or concerns. BTW what do you mean by “fixed the bleeding” has your son had his AVM resected or will they do that at a later time?


#12

Hello hope things are going well with your son. I had the same struggles as your son is having except on my right side. I had struggles with my right leg the most. As for the feelings on my right you could say it was like when your foot falls asleep expect this was all of my right side of my body. I had my AVM rupture when I was 10. After surgery it took a year till things seemed to be getting back to normal. Let us all no how things are going and if any questions just ask.


#13

My experience was similar to your son’s… an AVM bleed in the frontal right lobe. When the doctors brought me out of a medicated coma, I was very weak and paralyzed on the left side. Luckily because of my age (10 years old), I made a good recovery. Physio helped me regain the strength to walk unaided, and I walked out of the hospital a couple of weeks after the bleed. OT and SLP helped me as well with the cognitive aspect and memory loss.

I wish you and your son all the best!

From, Julia


#14

My 13 year old son suffered an AVM rupture almost 2 years ago. He initially presented with full paralysis on the left side, left visual field cut, and cognitive deficits. Fast forward 2 years (anniversary is 5/15/16) he is riding a bike, running, and has his drivers permit. He walks with a bit of a limp when wearing his brace and his left hand is not fully functional at this point. However, every day is an amazement. It was only last week that he started being able to sprint. Kids are fighters…they are resilient…never give up hope.


#15

Hi @Sweeper26, you are in the right area to get moral support and real stories of people who are going through touch situations. My wife had hemorrhagic stroke on Jan 28th 2017 and surgery on March 14th 2017. She lost her speech almost to nothing and gained back 80% (native language) and 60% English between Stroke and Surgery. However, after Surgery, her speech went back to 40% and she is not at 60%. The main difference after surgery is that her right side became numb from head to toe. Doctor mentioned that the numbness could be just by the swelling of the surgery and we can only wait and see if it goes away after 4 weeks of surgery. Unfortunately, it did not go away for my wife and she is still numb. However, the good news is that she gained some sensation back and now she is in the pin and needle feeling on her right side. it has been more than a year since surgery and the sensation is i would say 30% there.
Important things to remember

  1. patience is very important. You will have both good and bad days and just wait for good days when you have a bad one. it will come.
  2. Do NOT ever stop anti-seizure med if the surgeon prescribed it.
    In our case, the surgeon asked her to take med for at least 1 year but the rehab center neurologist and other mentioned that she did not have any sign of seizure. then i consulted with the surgeon and he half-heatedly accepted to slowly stop the med and now she is dealing with Seizures.
  3. Avoid processed food for him. (for all in general)
  4. You will get the sensation back. How much - no one can comment. More exercise and synchronous movements (both sides doing same movements) helps.
  5. Since is is only 9, he will jump back to normal very quick and you will see that.

My Prayers & best wishes and please keep us posted in his progress.


#16

I love this advice! Double :heart::heart:


#17

Hi Sweeper26,

Totally understand how you feel. The unknowns are so hard to deal with.

In August 2018, our 10 years old some had an HVM rupture. He has been speechless for 5 days and totally paralyzed on his right side. But like others said, kids are recovering so much faster then adult. After a week, his hand was moving, after 14 days, suddenly he could move his arm up to his elbow and after 18 days his leg engaged form the hip. On day 25, he done his first step with a lot of difficulty and a few days later it was so much better. 8 months later, he just have to ware a brace on his right foot but he can run and play like before.

Stay positive and take a lots of videos of his process. I received that advice and been able to create a Imovie of our son recovery. Whenever he ou we were felt a bit down because it was not going fast enough, we watch it and realized over and over how amazing the recovery was.

Keep faith, it will go better every day.


#18

I was a regular daily member here starting 10 years ago. So, you probably have never seen me. I saw your story about your son. I had an AVM rupture in 1959 when I was 8. I had a craniotomy, which I remember. I remember more about the barbaric tests done to me. Anyway, I lost the left vision in both eyes, don’t drive. I did ride a bike too, but I had to be very careful. I married, had two sons, was a paralegal at the Attorney General’s office in Delaware. I am now retired in FL. I did well, even though I never had any rehab. I am just letting you know that it sounds to me like he will also do well, especially with you as his parent…
beans


#19

Hi Sweeper,
Our 11 year old daughter had an AVM rupture just over a year ago.
It’s utterly terrifying!
We kept asking “How long will recovery take?”.
The answers were evasive & cryptic & we understand now, it’s because each brain injury is different & recovery varies so greatly.
My advice is to let time heal your son.
I asked my daughter for her advice to you and she said to tell you “It does get better”.
Child brain injury recovery has different needs for the whole family so I would suggest you reach out to The Child Brain Injury Trust, their website is very informative, with fantastic resources for the whole family including siblings and they will help you in anyway they can. They are based in the U.K. If you are not, find out what organisations are available for childhood brain injury where you are.
Headway is another charity that is helpful.
Meanwhile try to take care of yourselves by eating well, resting and getting as much support around your family as you can. Take some time for yourself even if it means just a walk to the letterbox! The consequences of what has happened take a lot to process & I am sure you are filled with mixed emotions.
If you have any other questions please contact me.
I send my love to you family.


#20

Hey Sweeper,

Your in good company, if you’ve come here in that time the more we know the better our choices can ease our worries. I recall the story my mom tells of the situation she was in after they had caught mine. And, the surgical team there in Mobile, Alabama; wasn’t all in so she immediately herself researched avmsurgens and found Dr.Scott and his team in Dallas and, within a few days we were in Dallas at my uncles tile the hospital released me and the rest is history.