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AVM Survivors Network

Anybody with experience being treated at Duke for pelvic AVM?


#1

Hello, all.
I am new to the AVM survivors network and am also new to AVM’s altogether. I didn’t even know what an AVM was until about 3 weeks ago when I got diagnosed with a “very large” and “very serious” one. Now, here’s my dilemma: As rare as AVM’s are, apparently I have a very severe form of the even more rare pelvic AVM. Doctor said it was stage 3-4 and causing all sorts of problems based on the size of it. The interventional radiologist in Greenville, NC didn’t feel comfortable treating me so he referred me to UNC, Chapel Hill. Just spoke with him today but he is leaving on a year long sabbatical in a few months and according to him I need continuing treatment over many years. I know, I’m rambling but bottom line is Duke university; has anybody been treated there or know anyone that was treated there for a pelvic AVM? The doctor at UNC seemed very concerned and even went so far as trying to refer me to the top AVM Doctor in the nation all the way in Colorado (Dr. Yakes if anybody has heard of him). But as I said I’m in North Carolina. Moving across country is not impossible but since Duke is right here in NC I would like to see if they’re capable of handling an apparently very severe version of a pelvic AVM. Any input whatsoever is greatly appreciated. As I said I was just diagnosed about 3 weeks ago so whatever info/support y’all can offer me would be greatly appreciated. Thank you in advance for your time.


#2

Welcome to the site, most of us find out we have an AVM before we know what one is. I hope someone jumps in with some experience form Duke that can help you out. If you go to the top right corner of the screen and click the magnifying glass and type in Duke you’ll get some hits that may help you out. I didn’t review the result but did get some. Take Care and welcome, John.


#3

Hi Hasbund,
Sorry to say that I have no experience with Duke for AVM treatment. Wonderful hospital and certainly may have an interventional radiology department. My pelvic AVM was treated at Penn State Hershey Hospital in Hershey, Pennsylvania. If you don’t feel fully confident in the evaluation at Duke, then coming to Pennsylvania may not be out of the question. My doctor is Dr Les Scorza. I was treated with the glue embolization in January of 2012. I have had many follow up CT’s and so far all has been fine. I will have another CT in 2020 and if all is good they are ready to say I will not need to continue to follow up.
During my procedure, they discovered that I had 7 different vein branches. Also, found that mine were bilateral with 4 on the right and 1 on the left that were large. Those five were glued and the remaining 2 were small and they did nothing to them. I hope that since you were diagnosed that you are moving forward to getting evaluated and treatment. I was diagnosed in Oct and did not receive my treatment until January. By the time I received the embolization, I was moving into congestive heart failure. My legs had become so weak I was walking with a cane. The time between Oct and January was because I also had seen a doctor first that said he would not treat me because of the severity. It took that long to get to the right doctor and get an appointment. I pray that you can get to the right doctor and hospital so that you don’t have to wait so long and your symptoms begin to increase.
Praying all goes well,
Happy


#4

Hasbund,

I’ve done a little search and Dr Ali Zomodori gets plenty of mention. I doubt if many if any of these relate to a pelvic AVM (being quite rare) but sounds like a doc worth talking to:

https://www.avmsurvivors.org/search?q=Duke

Hope this helps,

Richard


#5

Thank you so much for your reply. I am truly starting to realize how rare a pelvic AVM is and am incredibly appreciative of any and all insight from others who have them. Your situation is actually exactly what I am starting to go through now. The interventional radiologist in the town I live in won’t treat me. The doctor at UNC Chapel Hill is leaving in a few months and I’m waiting to hear back from Duke. I feel like I’m just playing musical doctor’s while this thing just gets worse. The doc at UNC is treating me until Duke can take over though. I was actually just at UNC today for an echocardiogram. I’m terrified that I may have heart problems as well. It’ll be a long couple of days waiting for the results of that test. And my wife and I are actually considering moving. Pennsylvania might not be a bad choice to look into. The doc at UNC suggested either Colorado for the Yakes AVM clinic or the Boston Children’s Hospital if I were to move. According to him those are the top two places for AVM treatment in the country. Unfortunately both of those places are also offensively expensive to live in and I’m not exactly dripping in money. If you’ve had a good experience at Penn State I may have to look into that. I’ve got my first procedure coming up in a couple of weeks where the doc at UNC is going to go into my arteries or something to get more detailed pictures. From there we’ll know the complete severity of it and will be able to make a more informed decision about if we need to move for treatment or not. Right now it’s just the waiting game.


#6

Thank you. I did look into him but he just specializes in Neurosurgery. It’s a lot easier to find a neurosurgeon to treat an AVM than to find a vascular interventional radiologist to treat a pelvic AVM I’ve found out. I appreciate all the help though.


#7

Hey - I have a pelvic avm, let me know what you did or are planning to do for yours. Mine was probably the largest in the medical literature lol. It was huge … see it here https://www.youtube.com/watch?v=w4ztLzxU8yI I had it embolized with onyx and coil in 2016 after it putting me in a wheelchair within 8 weeks. It appears to be returning as of last week : ( MRA ordered, waiting on insurance : (