Travel for AVM Ressection

Hi! I’m fairly new here, well, I’ve been reading posts for the past few months, but haven’t posted anything yet. My AVM was found in November after a ruptured aneurysm that was most likely produced by my AVM. I’m lucky to live in a large urban area (DC) that has very good medical care. I submitted for a second opinion at Stanford and they agreed with my neurosurgeon team’s recommendations for a ressection, but they piqued my interest on traveling to them to have the surgery done. So, i’m looking to see if any of you have travelled for a ressection and could share their experiences. It seems overwhelming to fly across the country, have brain surgery and then fly back, but at the same time, it is certainly intriguing to have such a renowned staff do the surgery. Any thoughts, comments, recommendations are greatly appreciated. THANKS!

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Am sure someone who has also went through this will give some advice, I personally can’t mines is different. But some great folks on here with so much expertise and info.

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Jennifer,

It’s definitely something I know people on here have done. I seem to remember a chap in New Zealand having to fly from South Island to North Island and vice versa as his surgeon was the other end of the country but it may depend on whether he had a craniotomy or embolisation etc. It’s something to just check off with the people at Stanford that your case is perfectly ok to fly.

Richard

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I’d love to know this answer too as I’m contemplating the same but from Baltimore to Arizona. It seems additionally scary!

I was “lucky” enough to live right up the street from Barrow Neurological

And, I’m still to scared to fly.

There was a girl on here that flew out for her embolization & then flew back. She wound up right back in er when she got back. Nothing too bad tho - I remember that they told her that the onyx cast had slightly shifted & nothing was way out of the norm.

Quite a few of my neighbors at barrow stated that they relocated close by for continues care after their surgeries < not, that this is financially possibly for many folk

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Hi

I only had to travel a few hours to NYC for my procedures. However I was hospitalized for two weeks and my wife stayed there the whole time.

So in addition to checking with your medical team about your travel, keep in mind your total time including recovery and will you have a support network with you? Where will they stay? What other accommodations will you and they need?

Just some things to keep in mind.

Chris

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If it goes the way mine went, even after you are released from hospital, you certainly would not be able to fly alone. I’d wonder about cabin pressure, stuff like that. I couldn’t imagine the discomfort in doing that having recovered from a resection.
… Peter

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I did not have to travel however I am located outside of DC if you ever want to meet!

We flew from israel to barrows in Arizona with our then 3 month old! We stayed there for a few weeks just to feel safe before flying to NY but officially they said she could fly as soon as she was released

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A growth was discovered in my cerebellum in April. At that time we were at our winter home in Arizona. We normally returned to Washington in early May. My doctor at Barrow scheduled me for surgery in mid June. We were assured it would be great outcome, a couple days in the hospital with no side effects, and good to fly almost immediately.

So we returned to Washington as usual and flew back to Phoenix for the surgery, excpecting to return within two weeks.

Things didn’t work out that way. First, I had to learn to walk again. After one week at Barrow, another two weeks at a rehab hospital, where I had on-set of continual nausea. Through the summer, I spent a total of 56 days in various hospitals to deal with ongoing issues and a few addition minor surgeries. Many weeks of out patient and in-home PT followed.

By November I could walk again unaided, but I still have significant balance issues. I got over the nausea and unfortunately ultimately regained the 40 pounds I had lost. We didn’t make it back to Washington again until the following May.

We were most fortunate to have a second home in the area where the surgery was performed. We possibly could have returned to Washington within weeks of the initial surgery, but that would have severely complicated the follow on medical care that I required. During that summer, having lost confidence in my surgeon for continual care, we tried to switch to the Mayo Clinic. They would not accept me as a patient until a year after my surgery. May have faced that same issue in Washington.

Brain surgeries have no guaranteed outcome. Stuff happens!

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Thanks everyone for the input. I have decided to have the resection done at my local hospital (Georgetown University) and feel in good hands with my neuro team. Scheduled for May 23. Fingers crossed it all goes well. Both second opinions (Barrow and Stanford) encouraged me to travel to them but the thought of traveling for a resection when I have good facilities locally was too overwhelming. I couldn’t imagine having to do rehab, if necessary, so far from home, or traveling across the country right after surgery to return home. Thanks again.

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It definitely makes it difficult, unless money is no object

I am extremely lucky living so close to Barrow Neurological :pray:

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What was your AVM grade?
Where was it located?

Hi! It’s a grade 1, almost grade 2 sitting on top just to the right of center and towards the back top of my head. Luckily fairly small and sitting on top with a good gap frOm the motor cortex. So hopefully minimal side effects, deficits resulting from the resection.

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