hi guys , i’m writing to you to see if you have any guidance or recommendations of surgeons , treatments, previous experiences . my 15 year old nephew has become incredibly unwell with a spinal avm in c7 of his spine . doctors in children hospital have performed a surgery and put a coil in the artery but he is still detoriating as the artery next to it started going the same thing & is too small to operate . has anyone had an avm in c7 and could provide help. we will go anywhere to help save his life .
Welcome to AVM survivors! It’s great that you found us. I’ve added you to a few groups and I hope that we may be able to help you a little.
Since you are in Australia, it would be good if any of our @Australians have a spinal AVM and can recommend hospitals / centres for you. I think a spinal AVM is one of the rarer presentations of these things, so there are definitely fewer people with direct experience and I don’t remember who in Australia has a spinal AVM. I think we have a few.
That you’re able to contemplate travel could be helpful.
Hi Natalie,
I am so sorry your nephew is struggling. My daughter has a spinal avm from c1-c4, and has been treated at Stanford with cyberknife. She is 2 years post treatment and has had some side effects, but we are so grateful to the amazing doctors at Stanford. We had been told that her avm was inoperable, after she had suffered several bleeds. We sent imaging and did a virtual consult with them before going out there for treatment. Of course, I don’t know if your nephew is a candidate, but they a a wonderful resource and are truly experts in avm treatments.
Good luck and god bless to you all.
Beth Carter
Hi Natalee,
I was not able to walk in 2015 with spinal avm at T10. Dr Leon Lay performed a laminectomy at T10 to fix the spinal avm. After 3 weeks rehabilitation I was able to walk again.
Additional information regarding Dr Leon Lai. My surgery was performed at the Jessie McPherson Private Hospital at Monash hospital in Clayton, Victoria.
Hi i have a AVM in my spine a few actually. T5 area mainly. I was at UCLH Queen’s square, London consultant Mr choi surgeon was fergus Anderson. I’ve had 7 angiograms and 2 open back surgery coils and clips then glue. Good luck
Is there any way you can get a biopsy of related tissue and check for mutations? Our son has an extensive avm with spinal avm at the T5 level. The spinal avm is considered inoperable. His biopsy and gene sequencing revealed a KRAS mutation after genome testing. He was then treated with MEK inhibitor, trimetinib, with positive results. See mri views here. Angiographic Evidence of Response to Trametinib Therapy for... : Journal of Vascular Anomalies
In your case you may not be able to biopsy for tissue sample but worth checking.
I have a Spinal AVM in T9 & T10 that is considered inoperable (as its extremely risky) as it’s inside and outside of the spinal cord. I’m also from Australia. Which state are you in? My neurosurgeon is amazing and is highly recommended. Her name is A/Prof Amal Abou-Hamden. She’s based in SA but has a very keen interest in all types of AVM’s so would be super knowledgeable about your nephews AVM.
I’m so sorry your nephew and family is going through this. My son’s AVM was relatively simple to treat and done in the USA. He wasn’t comfortable with the surgeon in Hobart and chose to go back to university. It turned out to be a blessing in disguise. Great hospital (Cleveland clinic) even better surgeon (Mark Bain). But that was a neurosurgeon with an amazing amount of experience. good luck in Australia… let me know if I can help even if it’s just emotional support as AVM’s are overwhelming all around.
If you are willing to travel it might be worthwhile investigating other hospitals outside of Australia.
I’d look into barrows in Arizona
Or Boston’s children’s hospital.
Sometimes there are drs who have more experience treating a condition. Not that the dr by you aren’t good just sometimes a condition is rare so you can’t compare the number of times one dr has treated vs another who has seen the same condition 10x more
Good luck!
A couple folks mentioned Barrow, they have a very easy to utilize 2nd opinion process that is done remotely. You fill in some information, submit images, pay a fee ($500 USD when we did); they review and provide recommendations and potential options. Might be worth looking into while you weigh other options and alternatives.
AVM in and all around C2, we used twice. Once when first found, then again after Johns Hopkins did all their work (6 embolization procedures with 20+ coils and even more glue).
If you do not find the help you are looking for in Australia please ping me and I can put you in touch with my son’s neurosurgeon at Stanford hospital in California in the US. He saved my son’s life. He has a spinal avm from C3 to 5 some of which is in operable.
Wish you all the very best. Never give up - one step at a time.
