Not sure what I’m looking for here except maybe some support. I have been beside myself for the past week since finding out my 9 month old baby girl has a 6 cm dural AVM on her occipital lobe. This was found somewhat incidentally as we did an MRI brain w/o contrast to evaluate her increased head circumference. So many times along the way to getting that MRI the doctors told us her head size was likely genetic and she was above and beyond meeting her milestones so we didn’t need an MRI unless we wanted one. But we went for the MRI because were nervous first time parents and found that her big head is just genetic but that she also has this unruptured AVM. Although my heart is broken, I know we are so blessed that we found this before it ruptured.
Tomorrow we go for an MRI/MRA to get a better idea of what we’re working with. We are meeting with two pediatric neurosurgeons next week as well. Our neurologist referred us to one of them and reviewed her images with him… They said it looks like she will require embolizations followed by surgical excision. We are seeing a neurosurgeon at Morristown NJ Arno Fried (who our neurologist suggested) and then also Richard Anderson at Columbia for our second opinion.
I am so afraid of the road ahead… looking for any suggestions for a pediatric neurosurgeon in NJ/NY area. Although I would obviously travel across the country to find her the absolute best, I am concerned about traveling a significant distance in the event of post op complications. So I am looking to stay at least within driving distance of NJ.
Any other tips, personal experiences, etc are welcome. Thank you
Welcome Kate, hopefully our group can help you along the journey and my heart goes out to you. I’m the parent of a 14 and 16 year old and fortunately the one one who had the AVM in our house. As a parent I can only imagine the range of emotions and fear. You are right, a blessing to find it pre bleed, and have some options. I’m in Canada so our system is quite different, but imagine some folks will add their view on paediatric neurosurgeons.
You might consider having a google of Barrows and Mayo in Rochester, also another I’ve seen mentioned is UCLA. I’m not sure on the paediatric side, but I would imagine your have some of the best in the NY/NJ area.
I’ve done a bit of searching through posts on our forum here and one name that came up recommended near you was Saadi Ghatan at Mount Sinai hospital.
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Like John, I’m the patient and (I think like John) I discovered my AVM I’m in my fifties, so to have the patient be my son or daughter at such a young age, I can’t imagine!
My own personal experience is that I got a bit more comfortable about the whole idea of neurovascular surgery by reading others stories and just the time for it to all sink in. John had his treatment through radiotherapy and I had my dural AVF treated through embolisation and I feel both are eminently gettable throughable. Embolisation followed by excision is a very common method of getting rid of these things: the embolisation reduces some of the risk in surgery.
I’ve shared your story with a few people. I hope some of them will chip in.
You’re not alone. We have a bunch of parents and carers who have been through what you’re going through and have done so successfully. It is quite the rollercoaster but you will get off at the other end!
I cannot say enough good things about the team at NYU Langone. They are great and they’ve performed a few of my procedures. They are really good people and one of the best in the world at understanding and treating these lesions. I can personally vouch for, and fully recommend them. Send me a private message if you want details or have questions.
Also, if this is a dural AVF, it’s likely it can be easily be fixed with no compromises. It’s vital you go to the right doctor though, that’s why I recommend NYU. I just don’t want to put the doctor’s names in a public thread.
Thank you all for your kind words and suggestions. We are finally home from our long day at the hospital for my daughters MR angio under anesthesia. She tolerated anesthesia well, which I was so nervous about. Now we sit and wait until our appts on Wednesday.
Will definitely look into the docs recommended! Helps narrow things down a bit… Going to see the docs recommended by her neurologist on Weds and go from there once we get a more definitive diagnosis. Thank you all again for your support, means a lot. Most of my friends/family have no idea what AVM even means, so it’s nice to talk to people who get it.
I was born with an AVM. It didn’t burst until I was was 40. I was told that it was inoperable. It was also on my occipital nerve. I am now 59 with no problems. Did you ask them if not doing anything was an option vs the side effects of surgery. I used Dr Judy in Phila
Reaching out as I need an outlet for my overwhelming feelings right now. My daughter FINALLY had her first angiogram today (delayed due to COVID) and was diagnosed with a Pial AVF. It has created a large high flow aneurysm. Apparent these types of AVF make up only 2% of all vascular malformations, so very rare. Due to the high flow, the option of embolization is no longer there. Craniotomy is our only option. Unlike normal AVMs, these are rapidly growing malformations and she is developing increased intracranial pressure.
So she is having a craniotomy on Wednesday, with increased risk as they cannot shrink the aneurysm prior. Although I knew her situation was getting worse and this stay wouldn’t just be a basic angiogram, I did not expect this. Anyone with similar experiences? Advice? Prayers? Thanks …
Hi. I’m sorry you are all going through this. My understanding of pial AVFs is very limited… the impression I get is that the vessels involved are usually too small for a catheter to get to to treat and they change too rapidly for stereotactic radiotherapy to be a sensible option (because that takes a long time to work). So craniotomy is the only option, especially if your daughter’s PAVF is changing pretty rapidly.
I had a dural AVF – so in the dura mater rather than the pia mater – and I felt my AVF was changing month by month. Mine was making me dizzy and I believe I had a decent amount of “reflux” or retrograde flow going on, whereby the blood flowing into a vein was gushing both ways along the pipe - both forwards and backwards; quite high flow. It was not pleasant and rather worrisome. So I know what it feels like to have some of this. Being in the larger vessels, mine was treated by embolisation.
We do have one or two pial AVF members and I’ve invited them to join this conversation.
I was pretty bothered about going into surgery. I had had a general anaesthetic before, so knew what that was like (which helped) and that bit is great. I had some different blood flows going on post op, quite a sore head when I came round and felt poorly. I expect having a craniotomy is less comfortable than I went through but the drugs are fantastic and really help with the discomfort. The main positive I took from my time in hospital was that nobody expects you to be comfortable with what you’re going in for and much of looking after you as a patient is to just take you through the steps one thing at a time. The team at my hospital did a great job of looking after me. That it is your daughter who is going through it, I’m sure hospital will expect to need to look after you somewhat and tell you what is happening at each stage. You’ll need to trust the team to look after her. They will. I’m sure they feel the burden of a tiny person just as you feel she is tiny and needs looking after.
My wife hung around the hospital all day, waiting for me. I’m sure it is the wrong thing to do if you can bring yourself to go somewhere else (and if there is anywhere you can go in these straitened times) as hospital is very very boring for the waiters. I’m sure it doesn’t help to hang around, not contributing, and you just think bad things. If, because of the coronavirus, they send you home during the procedure, take it as a good thing. Honestly. Distract yourself with something as best you can while it is going on.
So… trust the team to do the best for her. Our understanding of these things is better than ever and our ability to undertake operations like this is also better than it has ever been before. I’ll be thinking about you all tomorrow, sending you positive vibes as best I can!
Kate, I will be thinking of you and your daughter as you go through this. We have come a long way in the neuro world in the last while which is positive. Dr.s in the US are really good as well so another positive, and kids are resilient. It will be a difficult day for sure, time will crawl by. my son who is now 14 was born with a bowel condition called Hirschsprungs Disease and had 30 cm of bowel removed at 6 1/2 months. I don’t want to compare that surgery to a craniotomy but from a parent’s perspective understand to some degree. We left the hospital, wondered around a few stores and malls, went for breakfast and lunch. Just trying to occupy ourselves, it was hard. We were back before the estimated finish time and were there for post op.
I know my example does little to help right now. If nothing else, know that a lot of people are rooting for your daughter right now and are here to offer whatever support to you we can. Take Care, John.
Hi I just wanted to reach out as the parent of a child with an who has undergone brain surgery.
My daughter’s avm was diagnosed in utero, quite by chance. She was operated on at 4 months old. The months leading up to her surgery were terrifying. We flew out to barrows ( from israel) so she could be treated by Dr. Spetzler- now retired.
I can’t describe the fear of saying goodbye to your baby as they go in for surgery. The wait was interminable. But she came out. And she was great! And it was the wisest decision ever.
Gd should watch over and protect your baby girl. She should come out well.
Also, babies are very resilient. I pray that she should bounce back quickly and continue growing healthily.
Just an update. My daughter had her craniotomy last Wednesday. It was a long 8 hours, but the surgery was successful and the pial AVF was removed completely without complication. The doctor said it was even more advanced than they thought as it had multiple feeders that had to be clamped.
We are now home and she is doing great. Doc said we will just need another angiogram in about a year or so, but in the vast majority of cases, these types of AVMs do not recur.
Thank you all for your well wishes and prayers during this painfully difficult time. If anyone needs a pediatric neurosurgeon in the northeast, I HIGHLY recommend Dr Richard Anderson from Columbia. He saved my daughter’s life.
Thank you Yes she is… we’re coming up on a month now. She has since made a full recovery, turned 1, and started walking. It is crazy how quickly children can bounce back… I am still mentally trying to process what happened, but so thankful for how things turned out
i cant speak about places up there, but if you need to travel somewhere i would suggest looking into emory st josephs hospital. they were amazing with me
