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AVM Survivors Network

Between a rock and a hard place with hell in between

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.

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

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.

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

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

@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?

@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.

Hi, Chirstine. I heard the news the new monash children’s hospital is going to open this year. This is really a good news for the benifit of aussie kids.

@Jeffshong the new hospital is already open as is the new Starlight Room but the official opening of the room has been delayed until July-August to give us time to get things a little more sorted with Jack. It’s very nice with some wonderful features though quite stark in the wards themselves. The doctors are still finding their way around using maps on their ipads lol. A nice little touch is that every bed has a soft toy on it for each kid :slight_smile: They’re using Jack because of his particular situation and also to try and raise some awareness for the condition as it is difficult for most people to comprehend what we deal with.
How’s Larry?

Good to hear that. Larry is doing ok, but some new symptom has developed today when I wasn’t there. His feet and one of fingers is shaking out of control.The neurologist interprete this is voluntary movement, not a seizure, ok to ignore.
We’re Still waiting for Angiogram, seems not lucky to do this tomorrow. Lots of uncertainty ahead.

Jack is a special boy, hope he’s doing great. I’ll talk about Jack’s great story to Larry when I go to Childrens’ tomorrow.

Hi charles here. My paralyzed leg is moving but can’t put pressure on it so can’t stand. I still have trech as no one wants to remove it. I also still have peg tube but started to eat soft foods, mash and sweet potatoes. Thicken apple juice and chilly. I have been doing speech Therpy and physical therapy. This week going for new c.t and a other swallowing test. All this because I demand it. Changing to my third primary doctor on the first. Sorry taken so long but my partner has to type this out and make all my phone calls and paperwork and drive me to appointments. He is pretty wiped out. I know I will be able to speak once someone removes the trech. Next writing I will let you know where the brain bleed was for others in same situation. I’m still bed ridden and need help with everything but see small improvements. Hanging in their .
Charles

CHARLES!

IT IS GREAT TO HEAR FROM YOU! I often think of you and Dan, both battling to get you well. I don’t know how you’re doing it. It seems like the most difficult journey but there are people out here willing you both on.

With all my love,

Richard

Thanks Richard. Its a struggle

This is Dan typing for charles3. I cant use my hands yet and have to have Dan do everything for me. The frustrating part is I think I could have a 90% recovery if I had people whio cared and know what their doing.

Christine,
I just reconnected with this site and have read your posts today. How is your son? I worry as there are no later posts I can find. I pray it is good news.
Your post caught my eye because my son also had a very large, deep, complicated AVM that was considered “untreatable. He had trials of radiation twice with no benefit, but by the grace of God had a bleed in NYC and ended up in a hospital with a top neuro dept. One vascular neurosurgeon took an interest in him and was willing to try to treat him when no one else would. Very long, detailed story, but he did end up having multiple embolizations and 2 more stereotactic radiation treatments that eradicated the AVM! He does have residual hemiplegia, but no more risk of bleeds!
My heart goes out to you and I would love to hear from you.
Dianne

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Hi Dianne. Sorry for the long delayed response but Jack’s been keeping me busy.
He’s coming along.

A large part of his AVM has been shut down and the main stressed vein is normal size for the first time in his life. Differences can be seen on scans that are only a few months apart so the radiation is very active right now. He’s 13 now and the hospital say they will give him a cerebral angiogram for his 16th birthday. That’s when we’ll know if it’s gone for good or not as the whole thing doesn’t show up on MRI.

There have been a few emergencies as a consequence of irritation and swelling in his brain that we’ve had to deal with and we think a third rupture (waiting on MRI results). His medical alert dog has let us know 2-3 days before each emergency which is awesome. We can be prepared.

Increase in nerve sensitivity which in his case is causing itching for no reason has intensified and is keeping the pain management team busy. Tricky thing for them is that this, again in typical Jack style, is not something that has been seen before. We’ve tried different medications that work for similar symptoms in other conditions but he is now a focus group of one in the world on a different drug.

We are also importing medications not available here to deal with his constant motion sickness that have helped a bit. He’s finally starting to put on a little weight after not gaining any for 4 years.

He has not so far, and hopefully won’t, become completely paralysed down his left side but it has become increasingly painful for him to walk and he can only do so for short distances as he has developed spasticity down that side in his arm, hand, leg, foot and toes as a consequence of the scarring from radiation cutting connections in his brain. A nursing home kindly donated an electric wheelchair for his use as long as he needs so he can walk his dog and get to his medical appointments. He had botox injection surgery a week ago and we have a 6 week window of opportunity of intensive rehabilitation to try to form new connections before the botox starts to fade. We’re trying to get these new connections in place before the others are completely eliminated giving him a better chance at recovery. An ankle/foot brace has straightened his leg up nicely so the right messages will be sent to his brain. The arm will have to be dealt with by Occupational Therapy as the closer to the brain you are injecting botox the higher the risk of stroke. As he’s already high risk it wouldn’t be a good idea.

School has been out for a long time and he’s pretty over the whole thing and depressed about his future but hanging in there. I’m trying to find a mentor for him who suffered critical childhood illness but managed to go on and make a life for themselves as right now he just doesn’t see it as possible.

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Omg your a SUPER HERO … I’ve just read your story and you teached me a lot thank you … Ur an amazing person and i hope little jacky knocked his avm forever god bless you.

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I’ve never been called that before lol. It’s still there but we’re making progress. If you could wish it on yourself you would.

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How are you doing Charles?