I’m a 45 year old male residing in the southern U.S. I was diagnosed with a large cerebral AVM in my left frontal lobe when I was 18 years old. My original treatment option was “watchful waiting” given the location and size of the AVM, and I’ve been good with this. Outside of an occasional seizure that always occurred at night, I only had to take my seizure medication, and I was otherwise asymptomatic.
All of this started to change about 4 years ago when I suffered altitude sickness on a trip to Colorado and thought my AVM was rupturing (terrifying). Fortunately it wasn’t, but I’ve not been the same since. I deal with anxiety, my seizures have increased, and I’ve developed headaches and auras that I never experienced before. I no longer drive (for now), which is more than a little inconvenient since I have to commute to work. In short, my AVM is becoming more symptomatic than ever which I’m concerned could lead to a rupture. It’s constantly on my mind, and given my age, I’d rather be proactive and deal with it now…if I can…before I get much older.
So, I’m looking to reevaluate my treatment options from a couple of the best AVM surgeons in the country. Ideally, I’d go back to Robert Spetzler who consulted on my original diagnosis, but he’s since retired. I’ve been waiting on my neurologist to recommend someone/someplace to me, but honestly I feel like she’s slow playing me and am tired of waiting on her.
So…I thought I’d ask this board: Who should I consider for a consult as the best AVM neurosurgeons/hospitals in the United States? I’ve heard Robert Solomon and Michael Lawton should be on my short list, but I may be way off.
Hello @wap2 Dr Spetzler did have a say in his replacement. I have also seen Dr Lawton’s work and would of had him as my dr if I wasn’t already set up at Stanford.
And when my Stanford dr retires I will be flying to see Dr Lawton.
Hi @wap2 I’m so sorry to hear your symptoms are worsening. My AVM was found almost a year ago in my left frontal lobe after I had my first (and thankfully only) grand mal seizure after I fell asleep. 3 months after that once I had my MRI and angiogram to confirm it, I decided to go with surgery. My AVM was at high risk for rupture and I couldn’t take the chance to leave it in with the fear of rupture. I was referred to Dr. Jonathan Russin at USC Keck Medical Center who successfully removed my AVM 100%. Recovery has been going well and he was incredible. He did his fellowship at Barrows under Dr. Spetzler. I only have some side effects from the seizure meds I’m still on but other than that feeling great. I hope you find an amazing surgeon and they can help you. Dr. Russin would be an excellent surgeon to check out. Good luck!
Angela, who is your Stanford doctor? My son is currently set up with Dr. Grant from Stanford. I just wanted to see if you have him or someone different.
Hello @MaP20 No Dr Grant is not my Dr, but you can say that I am very acquainted with Stanford all sadly between myself, my little sister and my mother. We all been there way too much . They call myself and my sister the Stanford Sisters . I have heard good things about Dr Grant in my Ehler Danlos group for Chiari.
It depends if your son will need a craniotomy or embolism - my dr does not do the craniotomy if I were to have a craniotomy I actually would have this dr do it at Stanford Gary K. Steinberg, MD, PhD | Stanford Health Care Or if it was complex I would go see Dr Michael Lawton who used to be at UCSF but now he is at Barrow in Arizona He is literally the Best in the entire USA. He does remote consults as well.
How old is your son?
I am so sorry your son and your family is going through this
Hugs Angela
This is my dr Michael P. Marks, MD | Stanford Health Care
@MaP20 Thank you - We can seriously laugh about it all now. Cant tell you how many car rides I was crying or screaming fearing my little sister was going to die. I am at Stanford so much they literally think I work there. One of my pain drs even thought I was a doctor! When I said no he said oh a nurse I said no he said well you know so much - then I explained either its happened to me or another family member…If you ever feel like your are not getting the proper the treatment for your son ask for a social worker and you will be surprised how much things change. But pediatrics at Stanford is excellent. If you need an auto immune/infectious disease pediatrics dr for your son Dr Anne Liu is the best.
One thing I always do is get a few gift cards like star bucks before anybody goes into hospital and then when I see when a nurse is doing a great job I give them one. This little gesture so many times has helped my mom or sister get such better care.
I realized I didn’t answer your question. My son is 3 months old. We found there was something going on when I was pregnant during my 20 week sonogram. At the time, they were not sure what it was so I had a MRI done which came all the Stanford doctors on the team. They thought it was a dural venous thrombosis so every month, I went in for a sonogram. When he was born, he had a MRI done which confirmed it was an AVM and that’s when Dr. Grant came on board. For now, nothing will happen, he wants to just monitor it for aslong as they can. What scares me and my husband is getting him sedated for future MRI scans. His next one is in June and he will be 6 months old. If he does not stay still which I am sure he will not, they want to sedate and we just do not want it!
I am so glad you are well prepared and know so much! I hope to get to that point in the future. I Google and read any articles I can about this topic. I know all too well about how some parents do not receive the right services for their child. I am a stay at home mom now but before that I worked with special needs children and adults so I have seen push back from professionals for whatever reason (e.g., funding, parents do not know their rights and so on).
It is such a scary thing to even think that our loved ones may potentially pass because of whatever condition they have. I hate that the thought even crosses my mind. Like my husband said, we will give him the best life we can and embrace every second we have with him.
I’m going to look up Dr. Liu and maybe see if I can switch doctors. His pediatrician is the same as my oldest son who is healthy but it would be nice to have a doctor who understands this condition more.
@MaP20 I am so sorry to hear about your son being so young and going through this but so glad that they caught it. Of course I would be worried too about the sedation for the MRI.
My GF used to work in that dept at Stanford and I will give her a call this weekend and ask her about it -I really dont know how they would expect a child of any age to stay still for an MRI. I mean most people can barley lay still . I am weirdo and can fall asleep in the machine but I grew up in San Francisco in Noe Valley near a bus line and across from a church so anything like that puts me to sleep.
Dr Liu would I think only take on your son if he had an auto immune disease or infectious disease. She is very smart and even though my sister is an adult she took on my sister because she did get necrotizing fasciitis from a pool in Mexico and then she has an auto immune issue that Science has no name for yet and our pain neuro was like how did you guys get her no one gets her…
So as I am sure you know most people are born with their avms and live a normal life So I hopeful this will be true for your son- if you have doubts you can always ask for a remote consult with Dr Michael Lawton at Barrow who is considered the number one dr for AVMs in the USA . Stanford also has spiritual services too if you ever need it. I am not sure if they caregiver support. San Mateo County has caregiver support but I think its more for senior caregiver its on page 35 of this document- I am a volunteer with SMC Aging Commission - ( even though I am not a Senior ) But since I cant work this is my way to give back
If ever you need to vent or chill over a cup coffee let me know- Care giving and worrying is very stressful https://www.smchealth.org/sites/main/files/file-attachments/hath_web.pdf
Thanks again, Angela! You are just a wealth of knowledge. Do you live in San Mateo County? I did live in the South Bay but just moved out of the Bay, last month. However, my in-laws live in San Mateo so when we have a doctor appointment, we spend the night there. One of these days, I may just take you up on that coffee.
That’s great your sister got Dr. Liu’s care. I’ll ask Dr. Grant when I see him if he has any peditrician he would recommend. My son’s pediatrician now is fine for my older son whose healthy but due to my infant son’s condition, I would like someone just a bit more knowledgeable.
Thank you for that reassurance that everything will be fine. I am crossing my fingers that his AVM does not mess with him. I feel like I am this way because I was asked by 2 doctors what my plans were? If I wanted to have an abortion? That made me feel like something bad might just happen at any given moment. My husband and I went through my pregnancy not having our hopes up because we may lose him. We’re very thankful for him, needless to say.
For the MRI prep, the last one at least, they wanted us to not give him anything to eat for 4 hours prior to the appointment and for him to be awake the entire time. At that point, he was just 2 months and infants that young is suppose to eat every 2 hours! He missed 2 of his feedings and then when my husband took him to Stanford, they had to prep so it took another 2 hours. Finally, after 6 hours, they let him have something! We did not like that at all. The reasoning is to make him super hungry and tired so he goes to sleep so they can get the images they want. However, they reported he woke up twice. My husband said he refuses to go through the whole no food and keep him awake for 6hrs again.
Thanks for the information on the information on Dr. Barrows and the caregiver.
@MaP20 Sorry for the late reply- I actually thought I sent this awhile ago- Yes we live in San Mateo County. Of Course would love to meet up! I am sure Dr Grant can help you find a more seasoned pediatrician. Once I got assigned a new dr ( allergy dr) at Stanford. She had just become a dr and I was telling the person no I have a bunch of weird reactions I need an experienced dr who has seen a lot of different things not someone who just finished med school. Needless to say it did not work out…
I am so sorry that 2 doctors asked you about ending your pregnancy. That just breaks my heart for you and your husband that anyone would say that you and makes me so angry I dont have words . They took your joy of being pregnant from you.
I would think they would want a well fed baby - That makes no sense to me- its like when they tell you to drink so much water before an internal ultrasound hours before your test. But every ones bladder is a different size-
You the parents know your baby and how best to get him to sleep and not fuss and by chance it does not work out then oh well you have to do it again .on another day. The important part is your son is the patient and he should be comfortable.
I did finally reach my gf that used to run the MRI dept on the Stanford side and we spoke about your child’s case regarding the not feeding etc. She said that it did not sound right and to ask more questions and push back. She said that they usually can do a quick scan and swaddle the baby snugly. I was also thinking even if your baby was asleep after you fed him that the noise of the machine would probably wake him up.
I think I am the only person who can sleep in the MRI machine - growing up in SF noise puts me to sleep
World-renowned pediatric neurosurgeon who dx’d me in 1987 Dr. Derek Bruce, MD @ Children’s National Hospital in D.C. Travels now internationally to consult on difficult cases. May be worth checking him out. Best, GK
@MaP20 hi.
My daughter was born with a AVM. It was also found in utero. She had her first mri when I was 9 months pregnant/the night before she was born/ a few hours after they saw the avm via ultrasound!!The next one was when she was a month old. She also had to fast prior to the MRI. I think the reason is they’re concerned about vomiting when under anesthesia. It’s for your baby’s safety. As hard as it is for you, it’s for his best. If he’s breast fed he can usually nurse later than a formula fed baby.
I hope you’re able to find a dr that you’re comfortable with treating your baby.don’t let anyone take away the joy of being a mommy.
