Hello, I have just joined the AVM survivors and I’m very new to this site. My daughter 15 years old just have an AVM ruptured 4 weeks ago. She went to ICU, have a MRI scan and MRA/angiogram, then demonstrated likely she has a grade III, S1E1V1, right frontal periventricular AVM. We stayed at the ICU in Standford children hospital for 2 weeks, then transferred to a rehab hospital for 10 days. We got discharged and sent home on the day before Thanksgiving break. Currently, my daughter is taking Keppra, she is able to talk, move around, use her phone & laptop, and look just like a normal teenager. However, her speech and thinking process is still not as good as before. She still need to do outpatient speech/OT/PT therapy once a week.
What is really bothering me is the upcoming treatment plans. We are going to do another MRI and angiogram next week so we will discuss the treatment plans whether is going to be a microsurgery/radiation or both. This is going to be done in Standford Children Hospital, which is a well-known hospital in the Bay Area. As far as I know there is only two hospitals (UCSF & Standford) in the Bay Area will do AVM surgry. Since this AVM happened to my daughter, I did a lot of research just trying to found out more information about Standford hospital, such as how many AVM surgeries have done, what was the successful rate, and risk etc… However, there is not much data I could find in public wetsite. Instead, I found Barrow, the hospital located in Arizona, which has more AVM sugery done compare to other hospitals around the United States. Does anyone know about Barrow vs. Standford Children neurosurgery team? I know that I’m a worry mom, but just trying to find the best treatment plans for my daughter since she is only 15 years old and she misses her school so much everyday. I just couldn’t stop thinking about things might go wrong if I didn’t try hard enough…
I think it is fair to say that both Stanford and Barrow are world-renowned neurosurgery practices. We have members who have been treated successfully at both. I don’t think there is even the tiniest gap between them.
I’m sure members who have been treated at each will share their experience (we have two I can immediately think of).
Welcome, and my thoughts are with you and your daughter. It sure sounds like your daughter is doing very well so far in her recovery, the brain is a slow healer, but I it is a continuous process. These things are scary, most of us have never heard of them until us or a loved one finds out they have an AVM.
You are fortunate to be able to access Stanford. They are very well known, as is Barrow and Mayo. The world of brain treatment is never 100%, you need to be comfortable with the Dr. We have a ton of experience here which will hopefully help. I know some of the folks who were treated at Stanford will join in. Take Care, John.
Welcome to the community, I am glad your daughter is stable now and it seems you are near to having a plan of action. Sometimes it takes a lot of time to arrive at a plan.
I myself had craniotomy this year, on an un ruptured AVM in my Cerebellum.
We did the best research we could, and we found that Stanford, Barrow, Cleveland Clinic and Mayo were the Hospitals with many mentions of AVM treatments in the US. We travelled from Guatemala for treatment.
We ended un in Cleveland Clinic, and great full that everything went good. Of course not without challenges and time…
For example, Dr Bain who was my Neurosurgeon, mentioned he sees around 100 cases a year, and depending, craniotomy is a possibility in about 30 - 40% of the time. With GK being most of the others, at least at Cleveland Clinic.
I would say that top ten Hospitals in the US should be good across the board. What is important is that you feel confortable with Neurosurgeon and team.
Thank you John. And thank God for his healing for my daughter. My daughter was barely knowing how to talk or even make a sound the first week in ICU. When the time she finally knew how to say her name or simple words, the speech therapy told me she might need to take months or years to recover her speech. I was so upset listening to the way she talks. Then I went to the internet and found many successful stories of how people gained their speech back after one or two months recovery. Instead of worrying everyday, I started to print out some worksheets for vocabularies, comprehension reading, and thinking process related practices. Together with the daily rehab therapy , I could see the big improvement everyday. During the stay in rehab hospital, I just tell myself stop worrying, just do what I can do to help my daughter. I’m so glad that she is stable now, and her speech seems getting better and better each day. Again, thanks so much for your support and all the prayers in this group.
Thank you Francisco, thanks for sharing your experience of finding the right treatment plans. I’m glad your treatment plan worked out great and your are fully recovered now.
I’m glad that Standford hospital is one of the hospitals showed up on your list. I think finding a good hospital is important, the same time, finding a comfortable Neurosurgeon is also important. This is why I asked the nurse who is going to be my daughter’s surgeon, then I have the doctor’s name and learned a lot about her. She is a nice doctor, she visited our room to check out my daughter everyday, like 7 days a week. She encouraged my daughter that her speech will come back soon. The only think I worry is that, she does all kinds of neuro surgeries each year. And usually we know that AVM surgery is not the common surgery. Even the nurse told me AVM is not a rare surgery in the hospital, I still feel worry that AVM surgery is not the strong areas that she might have experiences at…
I understand after you hearing my concerns, you will agree that I’m just worrying too much. Just see if I could get some feedback from people who were treated at Standford children hospital.
Again, thanks so much for your support and all the prayers in this group.
Hi
I don’t have much useful information, I just wanted to say hi as another mother with a daughter (14) who has an AVM.
My daughter’s is in her right frontal lobe.
She was treated at barrows. I heard great things about UCFS as well. In fact my neighbor’s daughter was just treated there (and we don’t live in the US)
It’s new waters and it can be overwhelming, but you’re doing the best that you can
Welcome to the family Linda, I’m so sorry to hear about your daughter & sending prayers your way that she gets through this as quickly & easy as possible.
There are many members here that can offer their first hand experiences with the hospitals mentioned, which I’m sure will be helpful… please keep us posted on her progress & rest assured there is light at the end of the tunnel, it’s just some get there quicker than others… God bless!
Hi, thanks for your information. Hope your daughter is doing well with her AVM. Would you mind sharing your experience with Barrows? Any input will be helpful. Thank you so much. Linda
Look up Dr. Putman who did my AVM embolization procedure flawlessly. He is on the West Coast now. He is the best. God bless you and your family. I will pray.
All three hospitals are very good. Here is some information that might be helpful. I also had a grade III AVM, if read my profile it will give you a history of my AVM, from opinions and procedures.
I do not know much about Stanford, but i can tell you a little about Barrow and UCSF. I personally had my AVM resection at Barrow in 2013. I did alot of research and determined that Dr. Spetzler was one of the best Nurosugeon in the world for AVM. Since then Dr. Spetzler has retired, his replacement, per his recommendation was Dr. Lawton. Dr. Lawton was the head Nuerosurgeon at UCSF and performed a quite alot of AVM resections. He was a pupil of Dr. Spetzler.
Dr. Lawton left UCSF in good hands with a few of his pupils. I do not have information on them, but i can tell you that UCSF has a great support group that meets the first Thursday of each month. I have the information of the leader of the support group, just send me a message and i will forward contact information. They will be able to give you information about the Doctors.
Once you have all you films from MRI and Angiogram, i suggest that you get multiple opinions from different hospitals/neurosurgeon’s to help you make the right decision.
Back when i was diagnosed at Princeton medical center in 1990, head of vascular surgery said he knew of three doctors, and i picked the one in NYU Medical Center. Ive had a bunch of embolism procedures and all of those hospitals sound great. Theres only one AVM doctor i would put my life’s hands in, Dr. ROBERT ROSEN, nowvat Lennox Hill in NYC. BEST of luck. I went from being told i had a very bad tumor and had 6 months to live in 1990, to having 15 or so embolytic procedures, virtually asymptotic since 2008 until current. 1990band 25 yrs old,im 57 now. Prayers with you!
Very important, folks are so focused on wrapping their heads around an AVM and treatments, and they forget something as important, the psychological trauma patience go through. If you or someone you know has a chronic pain or multiple AVM treatnents, i would suggest counseling to handle the psychological aspects of this. Physical AND mental anguish are equivalent. Lastly, this sounds liKe a cliche but, live life YOUR TERMS!