AVM Survivors Network

Surgery Updates


Hello everyone :slight_smile:
A little update. My surgery is scheduled to be August 23rd with testing/pre-op stuff on the 22nd. Yay! :slight_smile: Except it’s not a guaranteed thing, I don’t know if anyone else has run into this but here’s the situation. So my surgery is scheduled but Dr. Yakes is considered out of network from my insurance so I’m unable to have him do my surgery. Unless I get two referrals written by my primary care dr. and my podiatric surgeon saying that I need to have this surgery done there. But that’s not guaranteed to get it approved either, it basically depends on whether or not my insurance believes Dr. Yakes and all my other dr.'s have proven that I need to have this surgery done there. Which I don’t understand how that isn’t already obvious. I mean he is the go to guy (no offense to any of the other AVM surgeons), further more I feel like anyone with common sense should be able to look at even one of my MRI’s and tell “that’s got to go”. So yeah, that’s it. Feeling a little frustrated but trying to stay positive :slight_smile: Hope everything is great for everyone


This is common practice for all insurances because he is most likely out of your network. It’s called prior authorization/tier approvals/appeals. I had to do it numerous times with my insurance. Of note, this can be a long, arduous, and frustrating process. If you do not get approval, it can literally cost you $100,000+ for one of the procedures through Dr. Yakes. He is an amazing surgeon. Insurance is not there for common sense. They are there for money only, they want to save themselves money, i.e. but not covering surgery. It took me three appeals over the course of 11 months to have my insurance agree to cover my procedures. Of note, it is easier to have them approve prior to the surgery date, hospitals will not hesitate to send you to collections after the fact while you are fighting with your insurance over astronomical bills. I had to have my primary care and Dr. Yakes office write me letters. I also ended up having to sit down with my HR deptartment to figure out what they actually needed to accept an insurance appeal. Do not give up, be persistent.

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Was your surgery through Dr. Yakes? If you don’t mind me asking. When I last spoke to Dr. Yakes’s insurance dept. I asked how much it would cost if I didn’t get the approval from the insurance (because i’d be willing to pay whatever it took to have it done by someone who knows what their doing) and her exact words were “oh, they won’t let you in the door without an approval from the insurance, they either have to cover part of it or all of it”. Which then I was like great :confused: well let’s pray they approve it :pray: 3 appeals over 11 months!? wow :astonished: I don’t know if I have another 11 months in me. Thanks lol that should be the motto of anyone trying to deal with the healthcare system “don’t give up and be persistent” :slight_smile:


Another little update :slight_smile: the referral from my podiatric surgeon has be sent to the insurance people. Yay! lol one down one to go :slight_smile: on kind of a crummy note my primary care dr. won’t write me the referral until he’s seen me (which it’s ridiculous to begin with that they need a referral from him when he’s had no part in my treatment) recently. So now I have an appointment with him on Aug. 9th (though i’m on a waitlist to try to get in sooner), and I basically have to have all the tests I need done that day, have him start writing and hopefully send the referral that day or the next. And then that gives us like a week for the insurance to process it and tell us if it was enough and we’re approved. And if we are approved we’re going to be finding out basically two days before the surgery (depending on how long it takes the insurance to decide if their going to approve it). Lol not stressful at all :sweat: :slight_smile: So yeah, just doing a lot of praying :pray: hoping that it gets approved, even though if it gets approved, it is going to be as down to the wire as it gets. I really hope it gets approved, because much more of this I think i’m going to go nuts lol :slight_smile: Hope everyone is doing well. Bye!


I have to say, it isn’t the kind of stress or process you need to be going through. I really hope it all works out! You’re reminding me that the waiting time I had to go through in the UK on our National Health Service is awful but not as bad as having to make all the dots join up for an insurance claim. I really do feel for you.

Fingers & toes crossed that it all works out.



Thanks Richard :slight_smile: Lol yes :smiley: I have all my fingers and toes crossed too :crossed_fingers: :slight_smile: Hope it gets approved


Well another little update-my insurance denied it again (me having my surgery done by Dr. Yakes), before they even had all of the paperwork. So now we’re going to fight it on the grounds of network deficiency (not having a provider that can treat me the way Dr. Yakes can in the state of IL) and it continues :slight_smile: Hope everything is going good for everybody


Well all my paperwork for the appeal has been submitted! :slight_smile: Yay! :slight_smile: Now the insurance has 15 days to look over everything and make their decision (though hopefully we get an answer sooner than 15 days). Now I just have to wait, and keep my fingers crossed :crossed_fingers: and pray :pray::slight_smile:
Hope everything is going well for everyone :slight_smile:

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Well I found out today that Dr. Yakes will be able to fix my arm and foot (and any other AVM’s they find) at the same time :slight_smile:
Yay! Lol now I just have to get it approved :smiley: :slight_smile:

I had a question though as far as any imaging/tests you guys have had…So when I spoke with someone on Dr. Yakes staff she informed me that I’ll just have the MRI of my foot and arm the day before my surgery. Which really confused me…Maybe it’s just me but I would think-wouldn’t they just do a full body MRI? Especially for a condition where you can have more than one and not know it? Also it confused me even more so because I mentioned all of my symptoms with my head/neck and my arm, but she seemed to think only my arm warranted an MRI because it’s been partially confirmed as a VM from an ultrasound. And it’s just frustrating because I’ve seen multiple Dr.'s/Specialists and none of them think my issues with my head/neck warrant any tests.
So yeah…any thoughts, experiences, advice would be greatly appreciated :slight_smile:


Definitely worth asking the great doctor himself [I’m making a grand assumption here] that if you’ve already got multiple AVMs and symptoms elsewhere, is it worth having a look there as well?

I’m sure he’ll give you an answer.

If you’ve got multiple AVMs, I think they are typically in certain locations (as evidenced by the groups we have on this forum) so a full body scan may still not be appropriate: but he might look where he knows any clustering with extremity AVMs might occur.

We just need fingers crossed that you get funds to go and see him!

Very best wishes!


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On average these can cost an astronomical amount. My insurance is usually billed anywhere from $55,000-$100,000 for the procedure. That’s why you need the authorization or to pay upfront.