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Alyssa’s Alarming Arteriovenous Malformation. Please help!

  • f55fa10fce394c30a6ac8ef3e2a26e06

    Trish asks

    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.

    on 13 Aug 2018

    • Dave Ledbetter

      Dave

      Thanks for reaching out to us- it means a lot to hear the support that AVM warriors like you provide. We are happy you are navigating this path with success so far.

      We will know more about our path once we complete outpatient treatments and discuss Alyssa's case with neurosurgeons. We look forward to discussing your journey and ours in the future.

  • bdfc90addb3a4588b11743a7c9c7657b

    Kat asks

    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

    on 13 Aug 2018

    • Dave Ledbetter

      Dave

      Thanks for the link to find additional support. We will check it out.

  • b067a6dc13c04c139c54935685b7eac1

    Jane asks

    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

    on 13 Aug 2018

    This question has not been answered yet.

  • 9969647b5c7c45339613d5eb029a455f

    John asks

    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

    on 13 Aug 2018

    • Dave Ledbetter

      Dave

      Hi John, thanks for making contact. Once back in NZ we will look into what the most appropriate comparable care as recommended by a Neurosurgeon looks like.

      Thanks- good to know about the options.

  • 696cc898825b4c0fb495aba1fbd5511b

    janet asks

    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

    on 13 Aug 2018

    This question has not been answered yet.

  • 696cc898825b4c0fb495aba1fbd5511b

    janet asks

    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

    on 13 Aug 2018

    • Dave Ledbetter

      Dave

      thanks for your quick reply. We would like to speak with you through FaceTime or Facebook messenger- which ever you feel is best.

      we are davetarnyaledbetter on Facebook- friend request?

      Maybe later today?

      thanks again

  • 696cc898825b4c0fb495aba1fbd5511b

    janet asks

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

    Number is 0274 345 236

    on 12 Aug 2018

    This question has not been answered yet.

  • 696cc898825b4c0fb495aba1fbd5511b

    janet asks

    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.

    on 12 Aug 2018

    • Dave Ledbetter

      Dave

      Thanks for reaching out! We feel alone sometimes but its so comforting to know that there are people like you to share with that understand our situation. Its all new to us.

      Im sorry that it has been going on for you and your son for so long. It sounds exhausting...What area of the brain was the AVM in? Why were specialists unable to asset you in NZ and Australia?

      What did the Ministry of Health process look like for you? Did they "come to the party" so to speak. Any advice?

  • 3c9e9b8d5abf46f4a6a10bc1e110e253

    Phil asks

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

    on 12 Aug 2018

    • Dave Ledbetter

      Dave

      Thanks for that. We are currently in USA. We will give you a call once we return.

  • be76128a6a5f46e2bc68516e38b0d67c

    Gretchen asks

    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

    on 12 Aug 2018

    • Dave Ledbetter

      Dave

      Thanks so much for the support. It puts our mind at ease to know there are people in the in both places to assist us. Thanks!

      We are trying to figure out the next steps to see how Alyssa's ongoing treatment in NZ looks like.

      Doctors on the USA side are trying to find a proper Neurosurgeon in NZ, but we are also concerned for how/ what the Ministry of Health.

      Any clues on the process?

      Iam beginning email to Ministry to enquire today.

  • 3c9e9b8d5abf46f4a6a10bc1e110e253

    Phil asks

    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

    on 12 Aug 2018

    • Dave Ledbetter

      Dave

      OMG! Thank you! This gives us direction of what to do and who to contact moving forward.

      I would like to know how it all worked out for you. Did your son have a Gamma Knife or open surgery. What is his situation now?

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