Alyssa’s Alarming Arteriovenous Malformation. Please help!

Hi Dave,

I am an AVM warrior. My AVM is in the right frontal lobe, and I have numerous aneurysms due to it. I am one of the lucky ones, mine was found before it ruptured, after a seizure last year. I had my Gamma Knife treatment on the 18th July this year at Princess Alexandra Hospital in Brisbane.

Honestly, I was nervous about the Gamma knife and I have had the side effects from it, but not for one instant do I regret doing it. I know it’ll be 2-3 years before I know if it’s been successful, and I remain positive it will be, sometimes I know, it is hard to remain positive through everything. I am booked for a craniotomy to clip my aneurysms in September.

Please don’t hesitate to contact me if you would like to know anything from a patients perspective, it is still very fresh in my mind, being less than a month ago.

I wish you all the best.

Hi Dave,

i have an AVM myself (although not in the brain but rather in my pelvis). there is a fantastic group on facebook that has a LOT of AVMers from around the world on there that you may want to join up into if you haven't already as im sure there are some survivors where you currently are that may be able to support you or give you advice etc while you're still in the USA.

https://www.facebook.com/groups/134820625466/?ref=nf_target&fref=nf (hopefully this works otherwise if you search for "AVM (Arteriovenous Malformation) Awareness". alternatively Ben's Friends has the most incredible support group for AVMs as that was their original support group.

sending my love and healing

Kat

Hi Dave

I am an AVM survivor having received stereotactic radiation therapy through Dunedin Hospital and an embolisation of a 6.5cm AVM in my right temporal lobe.

I cannot speak highly enough of the staff at Dunedin Hospital! The radiation shrunk my AVM to a size where it could be embolized (over a period of 3-4 years). I lead a full, normal life :)

The neurosurgeons and doctors out there are incredibly, amazing people and with the technology available, I am sure your Alyssa is in good hands.

I would be happy to talk to you about my experiences if that would help your family. Message me here.

Take care

jane

Hi Dave. I am a Radiation Oncologist from Dunedin. I am not sure if you are aware that Radiosurgery has been available in Dunedin for nearly 25 years, and we have treated 400-500 cases of AVM, so have good experience. We do not use a GammaKnife, but a standard Linear Accelerator with appropriate attachments etc. The results are the same as GammaKnife. It is true that sometimes GammaKnife is better, for AVMs that are very large or have a complex shape, but most can be treated with either machine. The treatment in Dunedin is publically funded, so no cost. We would be happy of course to consider Alyssa for treatment here. Wishing her and the family all the best for her recovery.

John North

Hi Dave. Yes. Face time works for me. I’m not hugely technical tho!! Do you want to call me. What’s your time difference.

I could do 1230 or 3.30 or after 5 pm today

Hi Dave. Yes. MOH very supportive for us. There is a fund called High Cost Treatment Pool. That’s where you go.

We had to go to UK as our boys AVM too big. It’s in his parietal lobe and goes into his motor cortex. We found two centres of excellence for gamma knife there. We also got an opinion from a guy called Jason Sheehan. He’s at University of Virginia USA but worked with neuro team in NZ for some years

Totally know what you say re feeling alone I found the best thing was to be busy finding out all this stuff. Every new piece of information was a win.

Really happy to speak if you want to Skype or something

J

Hi Dave - meant to say - happy to speak or face tme any time.

Number is 0274 345 236

Hi Dave and family.

I was so sorry to hear of Alyssa's current situation. Our thoughts are with you.

Our son also has an AVM - diagnosed when he was 16. He is now 21 and we have just returned from London where he had his 3rd gammaknife treatment for a large deep AVM that the specialists in NZ and Australia told us they were unable to treat. It seems the treatment is shrinking the AVM as it should, so now we just wait.

I spent a couple of years researching all the options for our son and I am really happy to share anything I can to help you guys right now.

Best regards.

I would be happy to talk to you about our experience call/txt us on 0273891427

I am a physician living in Waihi, recently moved from the US. I'm so sorry to hear of your situation! Please know my husband Rick (also an MD) and I are here and will help any way we can, both in the US through family and friends and here in NZ. I've sent a message to Dr. Brown through a shared physician colleague and assured her that you and she can lean on us. You are in our prayers. Gretchen Bosacker, MD

Firstly sorry for your families troubles. Our son had an AVM a few years back so we are well aware of the frightening nature of the situation.

We would like to recommend to you a most excellent surgeon that we found based in Sydney. He had dealt with several hundred AVM cases compared to much less experience many others had. His contact details are as follows;

Michael Morgan AO

Professor of Cerebrovascular Neurosurgery

Macquarie University

+61 (0)409074824

michael.morgan@mq.edu.au

Our best to your daughter. Kia Kaha