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AVM Survivors Network

8 year old son AVM. I'm terrified


#1

Hello, my 8 year old son was complaining of dizziness for a week, the Md decided to do an MRI. We got a call that he has a 1cm AVM and we are freaking out waiting to get angiogram done. We also have an nureosurgeon apt scheduled in early may. I just need some support and encouragement I feel like he’s a ticking time bomb and I pray that finding it was a blessing in disguise. I’m not sure all his treatment options yet. I don’t know if they change because of his age. But I’m just terrified. Please help me calm.


#2

Well it’s great news that they found the AVM before it could rupture. I was at the age of 10 when my brain AVM did ruptured. Your son has Luck on his side. I survived my AVM bleed but had to have multiple surgeries done because of the bleed. I’ll give you a heads up one thing they will do to scan your boys AVM. It’s called an EEG. An electroencephalogram (EEG) is a test that detects electrical activity in your brain using small, flat metal discs attached to your scalp. Your brain cells communicate via electrical impulses and are active all the time, even when you’re asleep. This activity shows up as wavy lines on an EEG recording. That’s one thing they check on me every 5 years. Just to check. Best of luck to you and your son.


#3

Ashley,

First, welcome! Discovery is a very scary time but as you learn more, I hope you’ll feel less scared by it all.

I agree with you and John.
Finding it is a good thing because it means you can do something about it.

That it is giving him some dizziness means that its worth looking into what to do about it.

1cm isn’t big.

There are interventions that can be done that are much less invasive than a craniotomy, so dont immediately think craniotomy.

There are lots of people here, like John, who discovered their AVM in childhood.

Don’t think there is an immediate danger – let the doctors assess it and they’ll tell you how promptly they need to act. If it helps, my AVM didn’t show until Sep 2015 and has only started to make me dizzy since Oct 2016. I think mine is bigger than 1cm and has been busy changing, so I’m in for a procedure next month.

We’re all here to support you. You’re not in this alone. Welcome!

Very best wishes,

Richard


#4

Ashley,

I had mine at the age of nine, and spent two years rehabbing before, I was released and returned to public school and accomplished a key goal in 2009 of walking across my graduation stage with no aids. So his limitations are as big as he lets his demons be. Push him to be everything he ever wants/wanted to be and know he’s, got to come to realization of his limitations.

Yours Truly,

Jerrod(Tex)


#5

Hi there. I know exactly how you feel as my son had a 2.8 cm AVM that was discovered 2 months ago today to the day. The next day we were in the neurosurgeons office. We were blessed with one of the top vascular neurosurgeons in California, and in my opionion, the country. He is at Scripps in San Diego. He had a cerebral angiogram and we had the option of craniotomy or gamma knife radiation. His AVM was in a spot that was operable with the only risk being some left leg weakness. We weighed options and didn’t like the risk of a bleed for several years waiting for the radiation to work. We scheduled the craniotomy for feb15th and the embolization first on the 14th. It was the hardest thing ever, but somehow we made it theough. He had some residual issues for 10 days with total.left aide paralysis and after 9 days in the hoalital, they sent him to inpatient rehab. The neurosurgeon said it would all come back and once it starts to, it will.come back fast. He was right. Within 2 days at the rehab, he started to walk. This was barely a month ago. 5 days later they discharged him to outpatient therapy. I drove him for 3 weeks and now he was officially discharged last week. The neurosurgeon says his CT last week was awesome and healed. He cleared him to go back to everything, including baseball. He has made a tremendous recovery and is AVM free and the surgery was a total success and he will never have to worry again. Email me with any questions but the biggest thing I can say is get to the BEST vascular neurosurgeon you can for their opinions. UCSF and NY Presbyterian and barrows in phoenix are all.top top places. Our surgeon studied with Lawton at UCSF and was so meticulous and a gifted surgeon. Here is my son!20170322_112728.3gp (130.6 KB)


#6

Oh and my son is 16


#7

Hello,
I was ten years old when my AVM was discovered in 2006. I had had no headaches whatsoever until the day the AVM bled. There had been no prior symptoms at all. Your son is very lucky to have the AVM found before a bleed!
It is important to avoid head trauma as much as possible. Personally, I did not take gym class at all after the AVM was discovered to minimize the risk of a bleed while I was healing from the Gamma Knife surgery. That being said, the initial bleed happened when I was just sitting at my desk doing classwork. It was six months after the bleed that they performed the Gamma Knife. However, please advocate to have a surgery done as soon as possible! We fired my neurosurgeon who told me I was perfectly fine to go sky-diving (!) after my bleed, but my new surgeon was ready to perform the Gamma Knife right away.
So my advice, get it treated as soon as possible, but just remember that he will have to lead a more careful life until the AVM is gone.
All the best.
-Julia


#8

I was 48 when my AVM ruptured, I had no idea what an AVM was let alone that I had one. It is very scary for sure, I can’t imagine how much worse it would have been had it been one of my children. I certainly agree with folks here, great it was found prior to a rupture. Will be praying for good news on the treatment options side of things. Take Care, John.


#9

Thank you! I sent you a message- at least I think I did, I’m new to this site and not really sure what I am doing lol.


#10

Thank you Julia, yes I want it treated as soon as possible. How was recovery for you? With gama knife?


#11

After the gamma knife in 2007, I went for routine MRIs for four years and an angiogram. There was never another bleed, but as I indicated, I led a much more careful life during the recovery. After four years, the AVM that bled was gone, but they discovered two smaller AVMs they had missed, each one only 2 millimetres by 0.5 millimetre in size. They had been hidden behind the initial AVM and therefore were not noticed originally. They were treated by the gamma knife in 2012, and after a few more MRIs, they have found no remains of any of the AVMs. While I am still very careful, I have now resumed many activities such as water-tubing and swimming.


#12

I sent you a big message!


#13

Hi! I think I replied! Oh I hope so,mine was kinda long back to you !! Lmk of you see it


#14

Hi, it absolutely is a time bomb and a blessing that it was caught before possible rupture. On 5/15/2016, my then 13yr old son, collapsed while playing baseball. CatScan revealed a 7cm bleed and an AVM, I don’t recall the size. After an angiogram, it was discovered that he actually had a flow-through aneurysm that was caused by the AVM. It was the aneurysm that ruptured. About 3 weeks after the initial bleed, the AVM and aneurysm were glued with Onyx to cut off the blood flow and the resection of both the next day. The end result of all this is that my son is still recovering from a major stroke as a result of the bleed on 5/15/16. He has left-side hemi-paresis, unable to play baseball and function like a normal teenage. His life has been forever changed. If only he had had prior symptoms like your son, tests would have revealed the AVM before a rupture, his life would be mostly unchanged.

While the angiogram is no fun, the onyx glue can be done the same way without major brain surgery and little side effects.

Hug your kiddo and thank god that the AVM has been found now.


#15

Oh my goodness, I’m
Keeping you and your son in my prayers. I hope he can make a full recovery soon


#16

Aedhawk21,

You’re son is lucky just as I was to have found the AVM before it ruptures. You can read my profile for the details if you wish.

My AVM was discovered fall of 1992. I waited until June of 1993 to have the surgery. That was 24 years ago. I was in my early 30s. I made a what is essentially a full recovery and have lived a very active life ever since.

Your son has so much more working in his favor than otherwise: now the medical technologies are so much more advanced, doctors, nurses, surgeons are better trained, and the fact that your son is only 8 is a huge plus!

As I’ve told so many on this forum: get in your mind that there is no other option for your son, absolutely nothing, than getting better. I’m not a parent. But I do know that children can sense when parents are scared, worried, etc. So stay, or at least act, strong and optimistic. He will be too. He’s going to be just fine.

Please do keep us apprised.


#17

Thank goodness that you found the AVM pretty early!
In 1979, at 18 years old, I found out I had my ‘5’ AVM, the biggest kind back then! For 10 years I waited to do something, because it was such a new problem back then. In 1990, I was ready for brain surgeries. Dr. Robert Spetzler/St. Joseph Hospital/Barrowlogical Neuro Institution/Phoenix, Arizona is who and where I chose. (I met @ 5 neurosurgeons in our country to find who I would feel the most comfortable with.) Since then, though, there is SO MUCH MORE information and knowledge on AVM’s and so much more HOPE for the futures of AVM survivors!

After my TBI, I did loose a lot, BUT, little by little, and year by year, I got everything back in different ways. This is now a better 2ND LIFE, and I am grateful that I made the bold decision to get my AVM fixed pretty well.

Good luck, and May God Be With All Of You!

Sincerely,
Lisa A. Stuckel