I am still new to all of this but I was wondering if anyone treated at John Hopkins and if so what Dr did you see? Any experiences you would like to share there to help make my decision of where to get this treated. I live in update NY and have already traveled to Chicago at the University of Chicago Medical Center and plan to go to Baltimore for John Hopkins and getting a opinion from Mayo Clinic as well. Its always good to hear if others have treated where you are looking. Any any help or experiences on traveling a distance for something like this. I am hoping that whichever treatment I pick I will be able to come home and complete recovery and rehab in my home town.
Thank you for any advice and I am so glad I found this site for such great support. Thank you
Yes, I had my treatment at Johns Hopkins and I couldn't recommend it more. My doctor was Dr. Daniele Rigamonti and after meeting with him I felt very safe and comfortable putting my life in his hands. I too, had to travel. At that time I lived in Delaware but it is worth the hike.
I was there last month. I had Dr. Coon, and am now being refered to Rigamonti. Sounds like he is the rock star there! They all seem to work together on cases pretty well, so you really end up with a "team" giving input. Good luck, I am very early in my process as well. Sending scans to Barrows as well. Dr. Coon would not perform any procedures due to risk factors, but as I said...did send me to Rigamonti too. Hope all goes well. Maybe I will see you in the halls...tee hee.
After reviewing my previous records and imaging and then Johns Hopkins doing their own diagnostics, it was then up to me to choose between two different surgeries/procedures: gamma knife or embolization. I met privately with both surgeons, each advocating their way of treating an AVM. Then the decision was mine and soon after, I was scheduled. For me, it was a pleasant experience, believe it not. I was truly fascinated by the equipment they had… I actually watched my own angiogram on a huge screen. After the injection, the veins, arteries in the brain highlight precisely where the AMV is. Johns Hopkins is on the cutting edge. I arrived at Johns Hopkins at the crack of dawn… about 5:00 am and left the same day around 6:00 pm and then I was scheduled for a follow-up. Hope that helps. Don't hesitate to ask questions, need support, etc. :)
Dr. Rigamonti is awesome... I felt very comfortable with him and I would never put my life in the hands of someone I wasn't 100% sure of. I tell others, if it doesn't feel right or if you're in doubt, then get a second opinion.
Hi Sara,
If you are able to travel to Hopkins, then get thee to Hopkins! I am currently being treated there by Dr. Judy Huang and Dr. Martin Radvany (he is doing my embolizations). I was referred to them because my AVM will be treated via craniotomy. It was my understanding that Rigamonti - who is also extremely gifted and awesome - tends to treat those in need of Gamma Knife whereas Huang treats those needing craniotomies. Please don't quote me on that though as I believe they each see both kinds of patients but each has a "focus". That was just an explanation I received from a PA there, so I have no clue how factual it is.
Anyway, I had consults with some of the top docs in the field (Arizona, NY, etc) and picked Huang at Hopkins because she was exactly what I needed in my doctor. And a quick Google search will reveal her countless accolades. I also liked that my course of treatment was decided in a round table discussion between the top neurosurgeons and radiologists at Hopkins rather that just the opinion of one doctor (awesome as she is). Each surgeon there took a look at my angio/MRI/CT and together they collectively made a recommendation for a course of treatment.
There have been some bumps along the way for me, but I truly encourage you to go speak with them. Please, please feel free to contact me if you have any questions at all.
It's important to remember that each person is unique and comes with their own set of circumstances to consider. Risks, health factors, age, and even more important is the AVM and its components: location (surface, deep or dura), size, severity, type, many many factors. What works for one person may be fatal or devastating to another. A friend saw a neurosurgeon in Florida who wanted to do several embolizations over a period of time. After he visited Johns Hopkins, they said even touching the AVM would be fatal. For me, I decided against embolization because there were too many risks. I chose the gamma knife which is also called stereotactic radiosurgery. I was sedated but conscious, thanks to the morphine lollipops, and my dad and his fiance actually got to watch behind a glass window! It has now been 9 years and I am truly blessed! Again, we are here for you for anything you need.
Hi Sara Richmond I hope you're doing well. pretty new here and bumped into your discussion as I was searching for John Hopkins. My husband was recently diagnosed with AVM on his right parietal lobe, less than 3cm. We are seeing Dr. Tamargo @ John Hopkins and still at the point of unable to decide between brain surgery or gamma knife (the only 2 options recommended for his situation). I was wondering what you have decided which treatment option to remove the AVM and your experience?
Hey Sara
I'm late to the party here, but was also treated by, and still follow up with Dr Huang. In short, I had an AVM bleed in January 2011, and she performed the craniotomy in June 2011. I still do have to follow up with her, but now it's only once a year. I really recommend her highly. Feel free to ask me if you've any questions!
Sara,
I don't know if you are still looking at responses, but I am from Orange County NY, and I get mine taken care of at Mount Sinai in New York. We probably don't have the same thing, as mine is in my chest, but the doctors I see there are wonderful.