Hello,
I live in Chicagoland and was recently diagnosed with a brain AVM. Likely going to need embo followed by surgery. However, I’m in the consult phase with several institutions (NWMedicine, UIC, Mayo, Barrow) but wondered if anyone would mind relating their experiences with teams in the Midwest? Thanks!
Dr. Guiseppe Lanzino and his team at Mayo in Minnesota - top notch people. I wholeheartedly recommend them.
Dr. Justin Singer and his team at Spectrum Health in Grand Rapids MI. He’s my AVM doc and did some amazing things earlier this year that have made a huge difference. They left side effects, but that was to be expected and it wasn’t because of anything but the nature of the beast. I will be going back to him for regular follow up and I would go back for treatment if needed in a heartbeat. If you want to get with his team and want me to open some doors with that, I’d be happy to.
TJ
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Thank you, TJ!
My husband and I will meet with Dr. Lanzino in early Sept. The consult phase is taking forever, I’m trying to be patient (life lesson happening). And a few more questions about your Mayo experience? What procedures did they do, what year, and how long were you there? Just wondering why you switched to Dr. Singer? And what do you mean by “AVM doc?” I am a newbie but am only familiar with interventional radiologists and neurosurgeons. I went from my GP to waiting 6 weeks for the IR and researching on my own in-between.
Thanks for your kind offer about Dr. Singer. I still have a lot to find out.
Thanks,
Jill
Jill,
I’ve been a patient at Mayo in 1978, 1984, 1987, and 2009. In addition to that, there have been a number of times where we have talked to him and also where the local doctors have talked to him and his team. Dr. Lanzino was not there for my first few times at Mayo, but they hired him to replace my prior doctor who has long since retired. The majority of the time, it was angiograms and embolizations and then sometimes surgery to remove some of the plugged up blood vessels. The last time we were there, 2009, it was a week - maximum.
Why did I switch to Dr. Singer? Well, let’s just say that Spectrum Health (the main hospital system in the western half of Michigan and my wife’s employer) hired Dr. Singer and that then put their practice here in Michigan quite high up in rankings. Dr. Singer plays the same ball game that Dr. Lanzino does and he plays it about 20 minutes from our house, not 9 hours.
AVM doc is my slang term for the doctor who is in charge of taking care of my AVM. I have those types of names for other docs too - my “throat doc,” my ear doc, my eye doc, etc…
Hope that helps - if I can be of any further help, let me know…
TJ
Thanks very much for the details, TJ! Every nugget of someone else’s experience is valuable to me, as my journey is just beginning.
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I believe it was Richard that I was talking to and I said, “You know, it’s almost 43 years (October it will be 43 years) since I was first diagnosed with an AVM. That means I’ve been around the block so many times, I’m wearing a groove in the pavement.”
I have talked with my doctors and my counselor and they wholeheartedly agree that if I can share my story with others and it helps them, in even a very small way, that is probably one of the best things I can do to make a difference for others. So, any time I can help, let me know…
TJ
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Hi Jill!
I live in Chicago too and got an opinion from almost every hospital here to treat my AVM. I think you are doing the right thing by getting multiple opinions. For treatment I ended up going to NW. Because of the complexity of my AVM, I needed to get gamma knife radio surgery, and NW is the only hospital with that machine. Even a very experienced neurosurgeon at Rush recommended me to go there. I highly recommend Dr Babak Jahromi. He treated my AVM and obliterated it. He is one of the nicest people I’ve ever met. The whole team at NW is amazing. Keep getting as many opinions as you can until you feel comfortable.
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Thank you John! You are a lot younger but we have in common that our AVMs were discovered before a bleed. Not sure of my grade yet. Glad to hear about your positive outcome with NM and Dr. Jahromi. Also, thank you very much for making your video, and stressing the “no rushing” part. That’s something I’m not good at but it looks like it’s time to learn something new. So glad to hear and see you’ve fully recovered, you are an inspiration!
Jill
Finally in a place where I can reply to my own question. In October 2021 I had surgery to remove my AVM at Mayo Clinic-Rochester with Dr. Lanzino. It took me all summer to decide on treatment option, doctor and hospital. I decided on surgery because I was 60 years old and did not want to wait for gamma and possibly need surgery anyway a few years later. It hasn’t been easy, but almost 4 weeksafter surgery, I am walking, talking and typing and doing basic household tasks. I am grateful to Dr. Lanzino and his team for their expertise.
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It is great to hear from you! Really glad you’re ok and it is always helpful to know how folk get on.
How are you doing? It sounds like life still has its challenges but four weeks post op is still very early.
Well done, survivor!
Richard
Thanks, doing well! It will be 4 weeks on Thursday. Resting and recovering and recovering and focusing. Trying to stay positive. Slowing down a bit. Drinking lots of water. Not driving yet but I’m doing some PT, OT after American Thanksgiving that might help. Thankful for this board and the great care I received.
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I misread!! 3-4 weeks is very early post op.
I had an embolisation back in 2017 and while I was fine to go back to work after 3 weeks, that was just the beginning of recovery (and I have embolisation down as a way less invasive a way of having surgery than a craniotomy). I had my surgery at the beginning of April and some time in August, I took my mum out for our usual jaunt to London for an evening concert. I can tell you that that was a stretch (100 miles there and 100 back, driving). There was plenty more getting back on top of things to do, even 3-4 months post op.
So well done!! Keep it up! The hydration I think is important, so that’s good. And feel free to check in here from time to time to tell us how you’re doing – what’s going well, what’s more of a struggle or a worry – because we are all as interested to know how you get on, and be there for some of the challenges.
Made my day! Well done!
Richard
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Jill I am seeing this so late but I hope everything is going well for you!