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AVM Survivors Network

7-year-old boy substantial AVM on left hemisphere


#21

Christine:
Thanks for your such warm support to larry and my family. Nothing is important than have loves in heart like you and many ppl in this forum.

I just came back from Royal Children’s and my wife will stay overnight with larry. Lukily, the AVM seems not ruptured by comparing CT images. The Angiogram has been scheduled on 20th of July. I’m asking the fellow neuro whether it is possible to bring this time forward, haven’t got positive answer yet. I’ll see and tried to contact the neuro you recommended after these settled down a bit.

One more new channel, one of my wife’s ex-colleague who used to work in Japan. She told us there is a top Neuro clinics in Japan which is willing to remote diagnosis without paying much. However, they need Angio to diagnose too.


#22

Can’t agree more!


#23

So he’s feeling better is he? And very glad to see that he is with a Neuro team now at the Royal Childrens. Get some rest tonight as your wife and son will need your strength tomorrow.
My son’s prayed for Larry when they went to bed tonight and were glad to hear that he is doing well. If Larry is still in hospital on the weekend they would love to come for a visit and bring him a present. Jack wants to let him know that he’s not alone and also to see how well he is doing following his ruptures to ease Larry’s fears. Let me know if that would be ok. Jack is only 10 and Sam 13 so Larry shouldn’t find it hard to relate to them.
That’s actually quite speedy for an angiogram and they might want to give him a little time to settle before they do it. As long as there has been no bleed that is a very good thing. There is always the possibility (if everything else has been eliminated) that he has suffered a serious migraine. My son has had a couple of those with the same symptoms as your son and was also admitted for observation.
I will get those contacts off to you in the next few days. Double-check on Japan as everyone I have contacted for an assessment has done it for free - also remotely. As long as they have the scans that is all they need to diagnose.


#24

Christine:

Appreciate your family’s the bless, It’s really encouraging. Larry just had a big headache last night in a short term(30 mins)in Royal children’s and keeping retching occasionally. This might push the angiogram appointment forward a bit… Larry definitely will stay overnight in Royal children’s. Not sure he will stay until weekend or not, I’ll let you know the updates. We’re more than welcome to see you during larry’s stay in hospital. Jack’s experience definitely will help Larry, though Larry has no idea what’s happening in his brain. Larry likes to play with elder kids as my neighbour’s kids(10,13 years old boy too I think) .

I also wrote email to Dr Andrew Danks last night telling him that I want to get opinion from him, hopefully I can get response very soon.

One word to encourage: life is tough, so are we !!


#25

Well done :slight_smile: And yes, we are very tough and so are our kids :slight_smile: You might want to find a simple and non-scary way to explain Larry’s situation to him. He’ll know there is something going on and kids imaginations can lead them into frightening territory. Hopefully he’ll be out soon :slight_smile: BTW - while you have time to spare in the hospital - a counselor or social worker should have been assigned to Larry’s case. Ask the nursing staff to have them pay you a visit and get them to organise paperwork for you to be taken in the Make-A-Wish Foundation (as that is the one used by Royal Childrens I believe) and also Brainwaves Australia. Make-A-Wish will provide fun opportunities for you and Larry to help ease your stress a little that are free and may also grant him a wish. They are an organisation that helps kids with serious medical conditions. Brainwaves Australia handle kids with Neurological conditions. They will also provide some fun opportunities for Larry and the family (again for free) and they also make grants of us to $1000 to help with medical expenses. Might as well fill your time with something while you are in there that is a positive :slight_smile:


#26

Hello! I am sorry to hear about your son. I have read numerous stories from other folks on this site who were told their AVM’s were inoperable and after getting in touch with the right doctors, were offered the treatment they needed. My 9 year old daughter was recently diagnosed with a large deep seated AVM and we were also told her AVM was inoperable, but we quickly realized we weren’t in the right place and they had no experience with AVM’s. After looking around a bit she was offered gamma knife and cyber knife and multiple locations. Please remain hopeful. Make LOTS of copies of your medical records and images on disks and send then around to best doctors you can find. I couldn’t say enough positive things about my daughter’s doctor. You may want to to contact him and send your son’s images and reports. He handles many tough cases and when we were there last week and little boy from Thailand was there for gamma knife. People come from all over. His name is L.Dade Lunsford and he brought gamma knife to the US 20 years ago and has trained and certified many neurosurgeons on gamma knife. He is at UPMC in Pittsurgh PA. USA - his office contact info is listed below - there is a lot of info about him online as well. Wishing you and your family all the best. I know it is very hard and I feel deeply for any parent going through this. Please remain hopeful & seek out the very best medical care you can get. Having the right doctor with lots of experience with AVM’s is your best course.


Jill Fratto

Kelly C. Powell
Administrative Coordinator
L. Dade Lunsford, MD
Center for Image-Guided Neurosurgery
UPMC Presbyterian
Room F-188
200 Lothrop Street
Pittsburgh, PA 15213
T 412-■■■■■■■■
F 412-■■■■■■■■
■■■■■■■■■■■■■■■■■


#27

Get information, as much as you need … and your heart will tell you when it feels right, when/if the doctor suits you, cares about your family , and answers everything you can think of with no condescending attitude. One who explains to you on your level without assuming you know nothing. When you find that Guy or Gal, then you will know…" I’ve found him/her".I got the right one who knows what he’s doing…That’s the one you go with☀ Wait til you have peace in your heart. God Bless

-Lorna


#28

Very well put… it destroys me to see this happen to any child, but that is not from God. Don’t lose your faith,hope, and love…that’s what will get you through☀
-Lorna


#29

Thanks, Jill and Lorna. I feel very warm here this website. Always looking for the encouragement power from here when I feel alone, weak and hopeless. Thanks, Chris’s family came to see Larry and give us lots of blessing and positive information.

The Angiogram has been done on last Friday and waiting for results this Wednesday. The neurosurgical, neurologist and radiologist will have a catch-up meeting on Wednesday to discuss his case.

Larry consistently has retching, headache and stomach. It makes him unable to sleep and living normally. The neuro don’t believe retching and stomach is related to AVM. However, the retching and stomach has been lasting so long. It’s really hard to convince me that they are not related. Yet the doctor are unable to locate the reason for these retching and stomach. Does somebody have the same symptom with Larry?


#30

My Dear Brother Jeffshong,

I am praying for your son as I type.

I am SO sorry your son is suffering!

In my own case my AVM was at my occipital lobe and extending slightly beyond. I cannot comment on your son’s exact case but for me, following MRI/MRA (with dye markers) they inserted platinum coils into the venous side to stop and eventually eliminate the AVM. It appears to have worked. I continue to need anti-seizure meds but the worst of the problem has not continued. I don’t know if this is something your docs have considered. My Interventional Neuroradiologist considered glue on the arterial side or the platinum coils on the venous side. Though it seems counter-intuitive to me to block the downstream side (the venous side) my doc actually said it is usually more effective. I can think of several reasons why that might be.

My doc, in Tucson, Arizona (Dr. Creed Rucker) was very compassionate and answered every question.

If this is something your docs have already considered perhaps it’s a possible solution. You might ask.

In the meantime - whenever I take my meds - I’ll pray for your son. Jesus is there with you and he in this storm!

-Tom


#31

I have not heard of these symptoms but he is so young it could maybe be related to being nauseous from the headache and or dizziness, everyone reacts differently. Could it be from medication? Maybe the medication is creating some nausea. I’m not a doctor but I know it would be very hard to watch my child going through that.
Have the doctors shown any interest in trying to figure it out? It seems like they would need that to go away to really treat him. I don’t know. I do know they have medication for the nausea that has little/no side effects. I wonder why they aren’t using it. Making him comfortable should really be one of the top priorities. I think I would as the doctors about giving him something, or if there is a concern about that. I completely understand your frustration … that has to be so painful, I’m so sorry🦋

-Lorna


#32

J,
I canNOT feel your sorrow about your son like YOU do, but I have tears just reading your post here! Barrow Neurological Institution is where I got my VERY large AVM fixed very, very well, in 1990, by Dr. Robert Spetzler.

I will pray for you all later on!
L


#33

Jeff,

My wife asked me about you & Larry this morning. Just thought I’d drop you a note to say we’re still thinking about you ('least Mrs D is still thinking about you!)

Hope you’re doing a bit better.

Best wishes,

Richard


#34

I can only wish you the very best. In these trying times, I try to look back and remember: My mother was diagnosed with spinal problems. She underwent surgery that completely left her back cut wide open. 'unfortunetly, as I was getting older I was diagnosed with about everything you could imagine that could be wrong with my lumbar spine. I had back surgery in October of 2008. I had both an Orthopedic Spine Specialist as
well as a Neurosurgen involved. The interesting part here is that the way they performed the surgery that only two (2) about one inch incisions were left. Twenty years ago vastly different. M Iedical knowledge os growing at such fast pace that we can only hope it will be enough to help us all a well.