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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…

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#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.

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#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.

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#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

#14

Dr. Vogelzang just did my most recent embolization on my AVM in the bottom of my left foot. This is my sixth surgery and the only one that has relieved the pain in any way for longer than just a few days. He is an incredibly intelligent physician! But, I have been having major issues with his office staff and getting return calls. Did you ever have this problem?

#15

I’m not sure if this was a question for @Rachel2 or me. But for me personally, yes I have unfortunately. He is a fantastic physician and if @Rachel2 hadn’t recommended him and I went with the dr. my insurance suggested I definitely wouldn’t be doing as good as I am now. However when it comes to getting back to you, i basically came to the point where I would call his office consistently (then they finally got back to me). Or even when I was there to have a procedure he can be kind of vague when you ask him a question, so I’d see if one of the nurses could answer my question.

#16

Yes I’ve had that issue too. When I’m there I don’t have a problem but over the phone is rough. Email works a bit better, this is how I initially contacted him. He had a personal RN assistant for a while don’t know if he still does but he was not very good either. He was referred to me by a previous Avm Dr at IU medical center in IN. He does a great job but I agree he does not explain much and is some times hard to get ahold of. It’s a trade off.

#17

@Rachel2 and @KoalaLove Thank you both for putting my mind at ease! I have been back and fourth with his personal RN assistant often regarding followups and next surgeries. I had not gotten his email, but I will look into that option next time I am able to get someone on the phone. Currently, I am waiting on him to call to tell me how my MRI looks compared to my last pre surgery and let me know if he’s able to continue with the treatments. It does help though knowing it’s not just me, and a little persistence is key! If you have any other advice on how to continue with his office I’d love anything you can offer! I do agree though, he’s a fantastic physician and I would not be where I am without his help.