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AVM Survivors Network

Between a rock and a hard place with hell in between


#21

I’m convinced doing the treatment was the right call. Here’s the thing, if you don’t try treatment, there’s an all but 100% chance of future strokes. Moreover, with big AVMs, the vascular steal process (i.e., blood goes to the AVM vs. healthy brain areas) will produce basically the same outcome as treatment side effects - local damage around the AVM. Thus, you’re kind of screwed either way, but I decided to take the chance at a cure, even though success prospects were around 40%. Just because treatment didn’t work doesn’t mean it was the wrong decision to pursue it. At the time, I researched all the probabilities and made the decision associated with the best probability of a good outcome (treatment = 40% cure rate with likely side effects, no treatment = 100% chance of disability/death over time). This is a twisted disease, and as a caregiver you have to be hard and make hard decisions as logically as possible. No escaping the emotional/spiritual consequences tho.


#22

This disease is cruel. And no two cases ever seem to be the same. We have left the decision up to him and if he asks my opinion I will give it and I will make sure he has as much info as I can find but ultimately it will be his decision and I will totally support him. In the mean time I hug him every chance I can. LOL


#23

@328mom,

It’s a really difficult situation with something deemed “too big” or too dangerous to operate but giving symptoms. If it helps, I think you’re doing absolutely the right things: learning about it, giving as much support as you can, letting him choose and sharing as many hugs as you can. Totally get that.

However we can support you, just ask away. We’re all here for each other.

Very best wishes,

Richard


#24

Sorry haven’t been on in awhile. Charles back in icu with infection and collapsed lung. He is getting better but I have a feeling we will have to start all over with physical stuff. So discourage. The state of Florida has not helped me at all. No aids or therapy. Always blaming the Doctor or the people they send out. They misread his chest xray. Only would approve a breathing machine that I had to pay for. No antibiotics .


#25

Dear 328mom,
I was 25 when my 6cm was found during follow-up to car accident. Deep, large, left occipital/parietal. Inoperable in 1988. Started treatment in 2008. Embolization procedures to shrink to size eligible for radiation. Two radiations. Long road, but AVM is all but obliterated. Still need final angiogram in 6-12 months to see if what is seen on last MRI is just a remnant or what.
Best wishes.


#26

It sounds like things are going good with you. I hope they find a way to help my son as well. We will get a second and third opinion.


#27

For sure it would help.


#28

The moderator team wholeheartedly agreed, so we now have a parents and caregivers group / space that you can use.

NB we also have a number of regional groups including a Canadians space, with someone keen to reach out in the Toronto area, I think.

Hope this helps a little.

Richard


#31

I hope this situation is improving Charles


#33

Thank you everyone for your kind wishes for Little Jack and myself and know that they are returned to you and yours.
Apologies for my long absence but I have been attending to my own medical issues which have been building over the last couple of years due to stress - ahead of focusing on Jack.
Now to the latest in regards to Jack…Angiogram was yesterday and is the first complete look at Jack’s AVM. Vascular Surgeon made the comment that his AVM is not only complex but extremely complicated. She said further that no-one has experience with an AVM like this in a child. Over 3000 images were taken and I was asked for and have given my permission for those to be conferenced around Australia as well as the scan heading to the UK, USA, Canada and New Zealand. It is also heading off to his Radio-Oncologist who may again conference his case with Europe’s leading experts. Lastly, the neurosurgeons - assessments will be done here and over in the US with 3 different surgeons - from Canada, Germany and South Africa, who will most likely further conference it from there.
Once everyone has done their assessments we will meet with Jack’s neurosurgeon here in Australia who will co-ordinate with all the other specialists globally and present treatment options and risks and then it will be decision time.
While they are doing their assessments Jack will head into hospital for up to 3 weeks (this is still being organised) for comprehensive testing of his physical abilities, psychological state and a complete Neurological work-up to get a baseline ahead of any treatment to ease and speed the process of diagnosis and rehabilitation following brain damage from treatment that could appear immediately following and down the track from treatment.
During his stay he will continue with his training ahead of getting his own medic alert dog (a dog that will be trained in a way a dog never has been before because of the complexity of his condition) with the dog visiting him in hospital. I am also organising for his teacher to co-ordinate with the hospital school for him to continue his studies while in there to maintain as much stability for him as I can.
Once that is complete we will head off for his Starlight Foundation wish (same type of organisation as Make-A-Wish) to the CSIRO facility in WA to look through the big telescope deep into space.
Then it should be decision time.


#34

Will be praying for you both.


#35

Christine my heart aches for you as a parent.


#36

The details may change but the guts of it is always the same. We are all in the same place, hoping for a life for our loved ones or ourselves.
The punches come that knock us off our feet. But as long as we all keep getting back up and getting back into the fight we’ll have done the best we can. Isn’t that always the goal in any life?
Once you move past the shock of your son’s situation (which I am sure you are still dealing with) you will be surprised at the strength you find within yourself for him and the rest of your family. You will break sometimes, you will have your moments, but you will always get back up and get back in there. I have no doubt of that :slight_smile: Stay strong Mom and know that we are with you :slight_smile: Prayers to you and yours for strength.


#37

NEVER GIVE UP!!! NEVER GIVE IN!!
Firstly, a Medic Alert dog has been found for Jack. A Smooth Collie by the name of Echo. He has one week to decide if he wants to change her name. She is 8 months old so Jack will start working with her very soon and she’ll be with us before Christmas. They have decided on this dog over a Labrador because she is extremely smart and whereas Labradors love everyone, Smooth Collies connect with only one person so she will be more dedicated to Jack than a Labrador.
Secondly, back from seeing Little Jack’s Neurosurgeon. Jack actually now has two separate AVM’s in his brain though they are linked by a single vein. A case like Jack’s has NEVER been seen before! I have his Neurosurgeon and the rest of Jack’s team convinced now that full on radiation is NOT the answer! It would take too long and cost Jack too much.
Jack’s Vascular Surgeon believes that she can do something but his Neurosurgeon wants to run it by someone with more experience at the Mayo Clinic in the US. That technique would involve going up through the groin to the veins in the brain and injecting glue to seal the veins. I gave him permission to discuss Jack’s case with whosoever he feels can add something. I’m sure they will respect Jack’s privacy but if there are any papers to be written on his case I have requested that my permission be sought. He’s going to bring in the best of the best in the world on this he said but we also discussed the need to be very selective. Jack’s case is a world first and we don’t want any cowboys looking to make their career off my son. He was in complete agreement with that.
He was also extremely excited about the treatment that I have come up with involving induced Hypothermia. I’ve told them if this is the best way to go for Jack they’d better give me credit as I came up with the idea and it’s never been done before! He will be taking over communications with the US Neurosurgeon for me. I might have come up with a whole new treatment but I’m no Neurosurgeon and don’t belong in the nitty gritty discussions. When everyone has done their assessments we will meet again go to over the treatment options and what will be best for Jack. I have also asked him to come to the US with us to participate in the surgery. He was extremely interested in the techniques they are using and if the surgery is successful he might be able to get the hypothermia and BrainPath into Monash to service Australians.
Neither treatment may completely eliminate the need for some radiation but if they can knock out at least the part of the AVM that is in a very important part of the brain there would be much less brain damage to Jack.
Buying a lotto ticket today - for the third thing lol.


#38

Induced hypothermia surgery now looking like it’s not going to happen. Still working on it.


#39

God bless your kid. Believe me, I totally understand how you feel. I have a son 7 years old with big AVM too. I’m trying to go to US or China for treatment. It takes too long in Royal Childrens just wait for Angio.


#40

You can usually get into Monash faster. Might be worth discussing with your specialist depending on where you live.

I’m glad to see they are not delaying on an angiogram for your son - insist that he be asleep for it. He’s too young to be awake for this.

And may God Bless you and your family Jeff. xxxx


#41

@Christine Ottens
It was definitely worth a try. Keep diggs ng for a treatment.


#42

@328mom Thank you for your words of encouragement :slight_smile: I didn’t think he was looking at complete surgical resection (removal) of Jack’s AVM as I know that would not be possible in his case. What I’m looking at is trying to get one part resolved surgically that is in an area that we don’t want to send radiation into as it is a very sensitive and important part of the brain, and getting a single highly stressed vein that is linking the two AVM’s shut down. I’ve still got him on the hook a little as I’ve asked him to look at Jack’s Angiogram when it arrives to reassess. He left the door open so I’ve got my foot in it lol. I’m realistic in my expectations and I know what is out there. The glue option is still on the table to my knowledge with the Mayo Clinic. It’s a slow process because of the limitations of the medical community and their mindfulness of the impact on the patient in regards to what they do. Because he is a landmark case we have to be mindful of who we discuss him with whilst holding to our resolve that he must be left with a life he wants to live or they leave him alone altogether. As has happened many times I’ve been presented with a brick wall but I’m testing my way around it while at the same time knowing there is no pot of gold at the end of the rainbow. At least not yet. Treatments for AVMs may not change much but one day they will be able to repair some of the damage they cause - most likely I believe through stem cells. Have you heard they can now use a person’s baby teeth to acquire stem cells? I believe they have to be stored in a certain way which my children’s would not have been but that discovery most certainly helps those who are to come.
And how is your son and your family coping? Adjusting to the insanity of your new reality?


#43

@DickD Monash Hospital here in Melbourne has opened a new children’s hospital. As part of that there will be a new Starlight Foundation Room for the child patients and their visitors. If you don’t know Starlight Foundation are another version of Make-A-Wish. I thought you might like to know that the Starlight Foundation have asked (and I have granted permission) to use Jack and the family for their media for the opening of the room. What that will involve and how big that will be I don’t know as yet. But he’s a big story so we’ll see. It won’t help us but will help the Starlight Foundation and hopefully raise awareness of this condition to some more people.