I’m reaching out to share my daughter’s situation and to seek advice from anyone who has gone through something similar. My 9-year-old daughter was diagnosed with a Spinal Cord Arteriovenous Malformation (AVM). During an embolization procedure, serious complications occurred that caused paraplegia, while the AVM itself still remains unresolved.
This has been an overwhelming and heartbreaking journey for our family, and we are now trying to understand the best next steps for her care and future.
If you or someone you know has experience with spinal cord AVMs, complications from embolization, or navigating treatment options (rehabilitation, referrals to specialized centers, legal/medical steps, or support resources), I would be deeply grateful for your guidance.
Any advice, shared experiences, or even words of encouragement would mean so much to us right now.
Welcome Safay, and know we are here to support you as best we can. It is beyond my comprehension how difficult this would be for a parent. I often say I was fortunate to be the one with the AVM in my house as opposed to my wife or kids. I had a brain AVM and Gamma knife so quite different. I anticipate some folks to add their experiences and thought who have spinal AVM experience.
These situations hit us really hard, and are difficult to understand. I find it important to keep track of questions to ask when the opportunity with care providers and specialists present. I see you are in California, so there are really good options to seek medical opinions and advice. I would continue to follow up with your daughter’s primary care provider and look at options for further opinions on possible next steps.
Welcome to our community. I’m sorry that you are here for the reasons you say. Like John, I’m a brain AVM patient but we do have a small and growing contingent of @Spinal folk here who will be able to relate to you and your daughter.
Firstly, I’m really sorry to hear about your daughter’s situation. Spinal AVMs are incredibly challenging and the understanding and treatment for them is still relatively nascent
Our son has a significant avm in his pelvis area which also has a spinal avm component. He did have embolizations but only very selectively in the non spinal avm branches.
He has been on a treatment, Mekinist, which has really helped. Significant avm reduction - including significant flow reduction to spinal avm. (Need to do genetic testing to see if the same genetic abnormality).
His doctors at the UCSF birthmarks and vascular anomalies clinic (bvac) have been incredible.
Happy to chat sometime if you are California based.
Very sorry to hear about your daughter’s situation. I was finally properly diagnosed with Spinal Dural AVF (T4-6 region) after 4 years of many misdiagnoses. (I’m a 58 yr old in decent health otherwise). My condition has improved since the surgery - but I have a long way to go.
Since I didn’t have any complications from the surgery - I can only speak to navigating the medical system.
Since I met with 4 very highly rated neurologists along the way - the advise to get a second opinion - or to keep getting second opinions - is very important. I was desperate and very thankful I finally found the neurologist who took an interest in helping me.
Be persistent and pushy when it comes to talking to Drs and setting up appointments. You might be told there is nothing available for 3-4 weeks. But - you need to call back every day to see if there was a cancelation. They will not call first when there is a cancelation - you have to keep calling them.
When it comes to things like MRIs or other tests, spinal angiograms etc, they might assign you an appointment near where you live that might be weeks off. You need to ask if there is another facility anywhere that could take you in sooner. I live in Houston which is a massive city - and they kept giving me appointments that were weeks away - only because they we the first available slots near me. But there were other locations in Houston that could take me within a day or so. Make it very clear that you can be wherever you need to be for an appointment with just an hour’s notice (even if this is an exaggeration)
Keep all your medical records and take lots of notes as to which Drs you saw and have copies of the post-appointment write up. Label all CDs and anything you have been given. When you go to see a new Dr - make sure you have everything - and that it is all properly labeled and dated.
Make note of the person/people in the Dr office you spoke to. If you call and end up talking to random people each time - your daughter just be another random patient to them. If you ask to speak to a specific person - of by chance can get their extension - things move much quicker. And - be very appreciative of anyone who helps you in this respect - and let them know that. You want them to remember you - and you want them on your side. This made a big difference for in terms of getting all my testing and MRIs scheduled on short notice. From my diagnoses of having a “very serious problem” to the surgery - took 6 weeks - which is amazingly good considering I had to have an MRI, a spinal tap and then the spinal angiogram.
I hope this helps and that things get better on your end.
I am so very sorry for you all. I just wanted to say that whilst I do not have experience of spinal AVMs as mine were multiple dural fistulae, I do have experience of being injured/having complications during treatment with angiograms as well as in craniotomy surgery.
Focusing on the angiograms: you may already have done this (please just ignore me, if so) but I think it is crucial for you, someone in your family or friendship circle, to get an account of exactly what happened when your lovely daughter suffered complications. This is a horrible thing to have to do and re-traumatising but there is such crucial learning and understanding that can emerge which will help future decision making.
The clinicians need to tell you clearly without using any jargon, pacifying (unhelpful!) language, wavy hands (what does that mean?!) or shrugs (still don’t know what that means!), about the events that led up to when they noticed that something was going, or had gone wrong. Be as compassionate towards yourself as you possibly can; you must absolutely not be taking on the burden of guilt if they become tight lipped. Yes, I know there is the legal side of things but I guess I want very much for you and your family to feel that you’re regaining some control after being hit with such a dreadful shock.
In my clinical notes, I was amongst other things, described as ‘a difficult patient management problem’…!!!