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AVM Survivors Network

7-year-old boy substantial AVM on left hemisphere


#1

When I’m typing here, My son on the bed is keeping retching and moaning. My heart was broken since August of 2016. My lovely son was diagnosed substantial AVM on his left hemisphere by MRI.

The symptom is getting worse and worse since this was found last year. From minor headache to heavy headache,nausea,soft hands/legs,visual disturbance and retching. On his 4th years, he had a seizure and then sent to hospital without finding the reason. I pursusaded the paeditrician to send my boy to MRI scanning after he experienced very often headache and bad sleep. Finally it end up finding this big AVM problem.

I saw two nerosurgeon doctor in Melbourne, one is from Melbourne Royal Childrens’ hospital and another one is from private clinic. Both have some conclusion that this AVM is inoperatable and nothing can be done. Radiotherapy is not suit this case too because this is diffused big AVM with more than 4 feeder artery. I have no other way but to see my boy suffering and eventually to die. And this is not the worse case, the worse case is my boy is become PVS.

Honestly, I’d rather like he can go to heaven than suffering this kind of pain everyday. I’m keeping asking myself why such a young kid experience so much pain? Why not me??? I’de like the God can transfer the terrible AVM to me. Bible says, Jesus like kids. Is this true???

I’m planning to bring my boy to China or US to see other neurosurgeon.Because I believe there are much much cases in these two countries. Maybe the neurosurgeon in these two country have different opinion, good bless. I wish they can offer some treatment plan. Does anyone have recommendation to see which neurosurgeon in US specialized this kind of AVM.

Here is comment from first MRI(Actually it’s diffuse AVM no nidus from neurosurgeon):

The examination demonstrates typical apprearance of very large AVM in the left cerebra hemisohere. The nidus is likely to be close to the trigonal portion of the lateral ventricle. There is exetensive abnormal vasculature in the parietal, occipital and temporal lobes.

the venous drainage is both to substantially enlarged superfical veins including the basal vein of Rosenthal and also centrally to the peritrigonal veins and thence to the vein of Galen and the straight sinus.


#2

My thoughts and prayers will be with your son and you. I’m sure there will be some really good recommendations from folks on this site in respect to Drs., lots of experiences in a wide variety of cases. Might take a day or two as people visit the site but I know there has been some recommendations on here for surgeons, and lots in the US. I was treated by gamma knife n Canada. Take care, John.


#3

Jeff,

I can’t really imagine how you are, other than that I know you’re doing all you can. Wishing you all the love in the world from my family to yours. We’re thinking of you all.

Lots of love,

Richard


#4

Barrows nuerological institute in Phoenix Arizona,we are all here for you, god bless and be strong,also uci medical center in Irvine California, my situation was very similar to your sons and this year will be 30 years post surgery for me, please keep us posted,


#5

The one in Phoenix is very well reknowned. It has really done some amazing things with AVMs and is a big research hospital for AVMS from what I understand. There is also Johns Hopkins in Baltimore MD USA. Same thing, a lot of difficult AVMS there as well. I know Johns Hopkins will consult over the phone free but they will need medical info and all pics. I am pretty sure Phoenix is the same way. Can’t hurt to call them both and see what kind of plan each of them derives. In the meantime I will pray for you and your family, keep the faith,stay strong. You’ve come to the right forum and we are all here to help. God Bless

,-Lorna


#6

Thanks, Lorna, John, Electrician and Richard. Really appreciate your advise and caring words. Larry’s still retching on the 5th day without going to school. My wife did some research on Internet. It says it could be blood steal phenomena since this is a such big AVM. I’ll try to call larry’s neurosurgeon to make sure the angio appoint has been made. Then, I’ll take MRI/MRA and angio to see neuros in US. I have three candidates, barrows, johns hopkins and Mayo Clinic. It might deserve to see two of them to get different opinion.

Thanks again.


#7

Tonight from 8:00pm Larry has extensive retching(2-4 seconds have one). I rushed into boxhill hospital and soon get bed. The doctor who saw larry last time when larry got headache and vomiting reported to royal children’s hospital. The x-ray scan on brain may be needed depending on the discussion between doctor and royal children’s. God bless its not a rupture. Tears bursted emotionally all the way through.


#8

Hi Jeff. I think you are talking to the right doctors, so I won’t comment on that. You posed a couple of thoughts on religion, and how your son’s experience fits into what you have read in the Bible. First off, your situation and mine are pretty similar, and I’ve struggled a lot over the years with how can the idea of a kid becoming increasingly debilitated with grim prospects for the future be consistent with core concepts of Christianity (“Jesus loves me this I know,” and so on). My conclusions are: (1) We live in a fallen world that is characterized by sin and death. (2) Bad things happen to people pretty much randomly in this life, including kids. If you consider the heroes of the faith, they were beset by all manner of horrors in this life. (3) Jesus’ love transcends sin and death, and indeed gives us a place with Him where the troubles of this world are no more (see Rev. 21: 1-4). The difficult future you perceive for your son - this is not an open-ended future, just a short-term experience. When compared to eternity, what happens here is less than an eye blink. (4) I think our role as parents is to be strong for our kids and families, and persevere through trials, to do the best we can for these others who we love. Taking the kid to doctors and so on is the right thing to do, but it’s important to always hold on to the truth that healing is inevitable - whether in this life or the next.

Of course your faith will be very challenged by your son’s illness. But deep down - you know it’s true that God loves kids (and their parents too). Hold on to that little bit of faith during the dark times, it will be enough to give you the strength to carry on. Reflect on the last lines of Amazing Grace, and shake your fist at fear - the victory has already been won.


#9

Larry finally fell asleep after 6 hours retching. Chest and brain ct has been done. However, hospital can’t find radiologist to confirm haemorrhage so we have to stay until morning. Both johns hospkins and harrow replied my email, I’ll try to push hard to do this angiogram ASAP to seek second opinion. Does anyone in Melbourne has recommended neuro? Larry’s currently with Dr Patrick Lo, not sure he is experienced to treat AVM or not. It seems very hard to find a AVM specialised neuro in Melbourne, even in Australia.


#10

Jeff

@Christine_Ottens is in Melbourne and is having a tough time with Jack but seems to have drawn good support from her docs.

Christine, any recommended doctors in Melbourne for Jeff?

Richard


#11

Jeff send an e-mail to me urgently at (email deleted). If you have any trouble then call me on (phone deleted). I’ll give you the direct e-mails to the head of Neurosurgery at Monash as well as direct e-mails to the best at Barrow in Arizona. Macquarie in Sydney is also doing some good stuff. Mayo Clinic in Arizona is also a very good option. Press for that Angiogram - it has to be done urgently.
Patrick Lo’s credentials are amazing - but I couldn’t see anything much in relation to AVMs. It does not hurt to get more people in on your son’s case and it won’t cost you anything at this point.
There are four options - no treatment (not an option in this case), radiation (takes 3-5 years to work so also not an option), surgical resection (angiogram will decide if this is possible though you might have to find the right surgeon to do the job) and glue insertion - probably the best option in your son’s case (again dependent on the Angiogram).
So email me and push, push, push for that Angiogram! It is imperative to see what can be done.


#12

Christine , can’t help stop crying at this moment when seeing your valuable advices here. I’m going to meet neurosurgeon in royal children’s this afternoon and will follow your advice definitely. I wish I could call you after I can have time to organise all these bad things. I’ve been with larry whole night, the symptom doesn’t mitigate at all. Keep strong !!!


#13

Feel free to call Jeff. I’m here for you. My son had two ruptures last year and we couldn’t have come closer to losing him on the first. I know how devastating this is for you and whatever help or support I can give to you and your family is yours.


#14

It was nice to speak with you Jeff. Just two more things, if you are struggling to understand the doctors then ask for an interpreter. Every hospital has them on staff for every language. Further, if you need me to come for help or just support then just let me know and I’ll be there when I can. Stay strong and know that the entire AVM community is here with you to help you and your family through this. You are not alone.


#15

#16

#17

Guys, I’ve made this thread private whilst I remove some personal details and passed those details to Jeff.

Now made public again…

Richard


#18

#19

Thank you!!! It seems he really needs are help for the little guy, once
again I got to hand it to you, the site has moved forwards by leaps and
bounds due to your taking over, very helpful, you obviously have a huge
heart and are putting a lot into this, despite your own issues, I speak
for everyone when I say we appreciate your hard work, thank you!!! god
bless,


#20

Thanks Richard. Haven’t worked out the private messaging yet. Another day when I’m not struggling with a tooth infection :slight_smile: