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AVM Survivors Network

Suggestions/ experiences for Dr.'s in Chicago/IL?


#1

Hello Everyone :slight_smile:
Now before I posted this I have looked through a lot of old posts/topics about Dr.'s in Chicago/IL however, almost all of them are over a year old. So, even though they were extremely helpful/informative :slight_smile:
I thought I’d post this as well :slight_smile:

I was hoping to get any experiences/recommendations of dr.'s in Chicago/IL because… the very short version of my situation is- I have an AVM in my right heel and most likely several more and my file was sent to the only two dr.'s in central IL who have had any experience (which wasn’t that much) with AVM’s-and they said they did not feel comfortable operating. Then it was sent to Dr. Yakes but has been denied twice by my insurance because he is out of state. Now were fighting it on the grounds of network deficiency, and I’m praying it will be approved :slight_smile: :pray: but if it’s not I want to be somewhat ready and find the best option I can in the state of IL. Even though I know already there are very few.

So yeah basically that’s it… just wondering if anyone has had their surgery in Chicago/IL? What was the outcome/complications? Was their anyone you had a positive experience with?

My biggest fear is it being denied-me having to go with a inexperienced Dr. in IL-and them messing up my foot/leg more than it already is :frowning: :confused:

Sorry for the long post but wanted to explain as in depth as I could
Any help/advice is greatly appreciated :slight_smile: Thanks


ISO Medical Groups That Treat AVM in Chicago
#2

Koala,

As an aside… have you managed ti get the doctors in Chicago to say they don’t have the experience to deal with it? That would seem a good lever for getting treatment out of State. Evidence on this site (low no of extremity members) suggests extremity AVMs are rare among rare.

Hope others can help you with a possibility but I’d say you’re looking for someone with Extremity or Facial AVM expertise specifically.

Very best wishes,

Richard


#3

I have not spoken with any of the Dr.'s in Chicago
Though I’d been wondering if I should :confused:

That’s mainly why I had started this topic-even though I did find 4 Dr.'s on here that people have talked about/suggested in Chicago they were all neurosurgeons and only one claimed (on his website) to have a lot of experience with Brain AVM’s. Which I’m not sure if my insurance is grasping that- A brain AVM and an extremity AVM (especially one in your foot) are two very different things.

Thanks for the advice :slight_smile:
I’ll probably start working on that…Lol this is way to much stress anyone should have to go through :persevere: But at least (hopefully :crossed_fingers:) something good is going to come from it :slight_smile:

Thanks again!


#4

Dr Fady Charbel at UIC, save my life. Worth the call…


#5

Thanks! :slight_smile:
I’ll definitely be contacting his office


#6

Please do. At home we talk about him a few times a week. He is a
wonderful man and a brilliant doctor. I am doing so much better than
expected. Thanks to him and his amazing team


#7

Dr. Volgelzang at Northwestern http://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=13225 he has worked on many extremity AVMs. He understood mine without explanation or unnecessary angios. My VM is in my lower right calf. So also similar location. Worth a phone call or email.


#8

Hi there,

My mom was diagnosed with Dural AV Fistual back in April. They did the embolization surgery in April and she recently went back for a follow up Angiogram last month in July and the surgery was a success and the Fistula is 99% gone.

She saw Dr. Thomas Grobelny at Advocate Lutheran General Hospital in Park Ridge, IL. He and his team were awesome! I highly recommend.


#9

I don’t know if you’re still searching for help, but if you are, I can give you the name of a doctor in Madison if you’re willing to travel. Just let me know! <3


#10

I had Dr. Awad from the University of Chicago. He and his staff were wonderful and did an excellent job on my AVM. I highly recommend him as he’s had experience dealing with AVMs and aneurism repairs for at least 20 years. I know his experience is mostly cranial but I figure an AVM is an AVM and extremities should be easier to fix than a brain.


#11

Unfortunately they are not an easy fix. They have different but equal complications and tend to be extremely resistant and difficult.


#12

Thanks for the suggestions :slight_smile:
I’m not looking for a physician anymore, i have had two alcohol embolizations with dr. Robert Vogelzang
I had contacted dr. Awad initially (and several other brain avm surgeons) to see if he treated extremity avms as well and his staff informed me he had never treated an extremity avm in his career.


#13

Well done to @Rachel2 for the recommendation. How are you doing? I hope it really helps.

Very best wishes,

Richard