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AVM Survivors Network

Between a rock and a hard place with hell in between


#1

Little Jack - High risk complex deep-brain AVM discovered March 2012
Stereostatic Radiosurgery Jan 2013.
Brain damage from radiation 2014 causing dizzyness, nausea and constant feeling of vertigo.
Ruptured Apr 2016. Only just managed to pull him back from death before emergency surgery and insertion of EVD tube to drain brain fluid.
Ruptured Oct 2016. Had to leave his own birthday party in an ambulance.
Feb 2017 - Doctors discovered AVM has grown as a consequence of a growing brain and veinous system. High risk of catastrophic bleed as a consequence. Death or serious brain damage would be the result.
New part linked to original by one highly stressed vein.
Doctors want to do more radiation. If they have to do more on the original part of the AVM then necropsy (brain swelling) could be an issue with long-term use of steroids required.
Radiating new part - high risk of paralysis down one side of his body. Increase in sensation that could lead to long-term pain for no reason that will have to be medicated for the rest of his life. Possibly issues with vision. Potential side effects being added to regularly as they workshop his case.
Radiation for Jack had previously been conferenced overseas. Neurosurgery has only been conferenced countrywide. Neurosurgery ruled out in Australia. Starting the discussion of neurosurgery overseas with new procedures that have been developed since his first radiation with specialists in Phoenix and waiting to hear if they are able to surgically intervene to at least reduce the size and risk of Jack’s AVM and allow for less of the brain to be radiated.
10 years old, a member of MENSA, beautiful child with so much to offer and a bright future…if I can just keep him alive and navigate him through life-saving treatment without too much permanent damage. Simply gut-wrenching to be dealing with his situation and have known for over 5 years that any day could be the day that will be his last.
I’m tired. I’ve aged a lot. But God help me I shall never give up as long as there is hope for a life that he wants to live.


#2

Wow :innocent: God Bless!


#3

His Radio-oncologist said to me last week, “I deal with children all day every day who have Cancer. But the AVMs, they are what get to me.”


#4

This second round of radiation is still very much in the workshop stage and we expect to be told of more possible side effects in his case.


#5

Christine, Wow!

You are having a deal between you, aren’t you. I completely understand how you mean about ageing, it does take it out of you. However we can be here to support, just let us know.

Keep strong. From what I can see, you & Jack were made for each other. Between you, you’ve everything to get you through.

Very, very best wishes,

Richard


#6

I can’t imagine what you’re going through. My thoughts and prayers are with you and your son, stay strong. John.


#7

@Christine_Ottens

I was thinking about you last night and all the other parents and carers. I agree with @JD12 and I expect we all feel the same, that being a parent of a child with an AVM is as tough as anything.

I also know @Charles3 is a carer for Charles and being a carer for an AVMer brings its real challenges…

Would there be any value in us creating a sub-category or group specifically for parents & carers? I want to try to bring the right support together, to help people find others in the same circumstances as themselves. If that would really help, do say.

Thanks

Richard


#8

I think its a great idea Richard, some of the way I coped when I got home was to look and my kids and thank god it wasn’t them. I thought it could be one of the kids, on numerous occasions as I was struggling post bleed and made me accept my postion and focus on recovery. The roller coaster I was on would have been far worse had it been one of my children. I can’t fathom the impact it has, so connecting those folks I think is a really good. That’s my 2 cents!


#9

Thanks Rob, Richard and John. As you would have gathered I’m a very determined individual when it comes to my son and his well-being. Such an amazing growth in my skill set since this all started!

As to your suggestion @DickD there was such a category on the old forum so if you’re asking then I assume it has not come across. Might I suggest a group for Parents/Carers with two sub-categories - one for sufferers under 18 and one for over 18. Why I make this suggestion is because although there are certainly crossovers between the two - the under 18’s also have separate issues. These separate issues relate to the fact that they are not legally able to direct their own course and/or may be too young to make the decisions for themselves. This is an added responsibility and burden on the parents of the young. Decisions we will have to live with in regards to the impact on our children. There is added fear about how the child will feel about our decisions as they mature and the impact our decisions have had on their lives and the guilt that goes along with that.
In addition - under types of AVM why is there no category for Brain AVM?
I don’t get here very often unfortunately to support fellow members because of Little Jack’s situation which is unfortunate. The wealth of knowledge I have garnered over these years in regards to Brain AVMs and a couple of specific treatments I very rarely see here.
A consequence of having a child with an AVM that is rare even within this community. His AVM is 1 in 5-10 million annually and has been conferenced with at least half of the world’s specialists in regards to Stereostatic radiosurgery.
What I am actively working on at the moment - I really don’t like the idea of more radiation for Jack - at least not to the extent that they are currently proposing. After doing my own research I have come across a surgeon who pioneered a technique of inducing hypothermia to enable surgery on previously inoperable aneurysms and has since completed hundreds of successful surgeries. I have made personal contact with him and am asking if this technique has ever been applied to an AVM as I could find no case studies on this. The surgeon has contacted me back and is interested in seeing Jack’s scans to do an assessment of the possibility of doing the procedure. The one issue is that there is a time limit on having someone under induced hypothermia. He has also brought in one of his colleagues to the discussion who has performed hundreds of successful surgeries using a technique call Brain Path whereby rather than cutting through the white matter of the brain (where all the important stuff is) they use a probe that goes with the natural grooves in the brain (without cutting) to reach the surgery site. When the surgery is done and the probe pulled out the brain tissue returns to it’s original position without damage. A combination of accessing the AVM via Brain Path with induced hypothermia to freeze the blood and eliminate the bleed risk while performing embolization may be a future possibility for some even if not my own son. Even if the procedure does not eliminate the need for radiation I’m hoping that if part of it can be resolved then less of the brain would need to be radiated.
As I stated earlier I am unaware if this has been done before and may be a new option as a result of my idea and the surgeons techniques and skills. Fingers crossed.


#10

WOW! The path you walk is in no way to easy. All that I can ask is that you get strength as you try to do was best for you son.
It’s kind of weird being this category. No one wants to have serious medical condition, but I really don’t know how to feel about having a rare medical condition. You mentioned a brain category on this site, but I do think a large number of people on this site are dealing with brain conditions. The great challenge is that the brain is both one of the most sensitive and complicated parts of the body and any type of operation, or intervention into that area comes with significant risks. I can deeply appreciate your caution and not wanting to expose your son to excessive radiation.

Do you have any links to this procedure you’re talking about?

As always God bless your son and stay strong!


#11

My son is 23 and we just found out about his AVM. Everyday I feel like I want to throw up and cannot stop wondering when things will get worse.


#12

Thanks Rob. Yes there are a large number of people dealing with brain conditions - it would most certainly be the majority - but there are issues that relate solely to brain AVMs that I think would be better served under a brain category. For two reasons - for ease of research for those dealing with brain conditions and also for those who have other AVM types/locations who may find it difficult to find posts relating to their particular condition with all the brain stuff uncategorised.

I do have links but I’m unsure about sharing more information in regards to these procedures until I have checked out if they are indeed viable.


#13

I am so very sorry. I know where you are right now and it’s not a nice place. It will get easier as you get more information and a direction about what can or should be done I hope. The scariest part is the not knowing I think. Can I ask where your son’s AVM is located and how you found out about it?


#14

Christine,

I think the reason that brain AVMs are not in their own category is that these are among the more common and the whole site was created by Ben Munoz who had a brain AVM, so the original intent was to share among people with a brain AVM.

I get what you mean about under 18 v over 18. Ill discuss with the other moderators. If there are more people who would find sub-categories useful, they should speak up. When the site was migrated last summer, migration of the sub-categories was not possible and the moderators only set up the ones which were being actively used. There is a balance to strike between having groups that help the right people collaborate & share and having so many that the sense of “community” is broken: that we become like neighbours on the same street who dont get to know each other & talk to each other, preferring to stay indoors with their immediate family.

So its a balance.

The treatment you’re looking into is interesting. I would encourage you to start a specific topic on that under treatments perhaps, and use it as a blog to keep us (and future generations) up to date on progress on that specific subject, even if you decide that the treatment isn’t yet right / safe / ready to use for AVMs. In its own topic, I think it could be a really helpful resource.

Best wishes,

Richard


#15

It is in his brain. He started having headaches in November and his Doctor sent him for a CT scan, then an MRI and by the end of January we were getting an angiogram. It is too large to operate on and gamma knife can be tried but no guarantees and the usual risks.


#16

At Xmas time he started getting headaches which he never had before. A couple were like migraines. His Doctor sent him for a CT scan then an MRI and finally an angiogram. It is 6cm and inoperable. He can do gamma knife on a smaller part of it but there are risks with that. This is all pretty new to us.


#17

Hi Christine:

I read your post and it broke my heart! Normally I will not respond to posts regarding children because they are too painful to me. My opinion is that kids shouldn’t get grown-up diseases! But, they do. Jack sounds like a very special little boy with a big disease. You keep fighting for your Son. Get 2nd or 3rd opinions. Ask every question you can think of. Pray and be patient. God Bless you and little Jack.

Sharon D.


#18

Christine, I am praying for you, Jack and for a way to treat Jack
.


#19

Hey just came to express sympathy and understanding. My kid has a complex AVM, radio surgery was the only option, didn’t work & had side effects. One bleed so far. Kid is a musical genius, but now his right side is partially paralyzed, so he just plays with one hand. He had (past tense) so much potential. He’s basically disabled at this point & things are only going to get worse. This disease is brutal. I’m sorry that our experience dovetails.


#20

So do you wish you hadn’t done any treatment and left it alone and took your chances with his AVM?