Pelvic AVM/aneurysm and recurrence

Yeah, I’m not sure how it all works. I just know when I was in a lot of pain I went to the ER, and all 3 times (including the trip I discovered the AVM) I was treated. Under my plan, anything they do at the ER is covered under the Emergency portion of my insurance.

I get it, in your case you qualified for ER. Unrelated to you, some visits are not covered. I was initially denied coverage once because my chief complaint was swelling (Edema) of birthmark. It was due to VM, new to me and "birthmark swelling" did not make the cut. I went to ER due to fear that something very wrong was about to happen. I did not know yet that mine was only veins. I did challenge the insurer's decision, as it led to diagnosis/treatment at Lenox Hill.

My husband's visit to ER was dismissed by insurer as not payable. Chief Complaint was Cough. No respiratory distress but subsequent chest x-ray showed 4.4 inch area of lung lower lobe had no perfusion (oxygen exchange) which caused a fainting episode the next day.

We have a "Cadillac" insurance plan; yet we really need to get the RN referral. UNLESS there is an obvious problem, like your pain. I am just making a point. Wishing you the best....................Update: I saw the edema specialist and will write a separate thread, under Extremities. I learned a lot.

Yeah, I know the insurance companies try to get of paying as much as possible. I’ll check out your post on the edema specialist.

My ordeal is hopefully over once and for all. The aneurysm I had from the AVM kept refilling after being drained. Even though the AVM was embolized and there was no flow to the aneurysm, for some reason the walls of the old vein were acting like a cyst and filling the inside with fluid. Finally, I had open cut surgery to remove the aneurysm on Tuesday. I am at home recovering. Once I am healed, I am hoping my troubles will all be in the past. I guess I’ll find out soon enough.

Hi, It's Mrs. Noel, Austin's mom. So happy to read this. Pray you will be completely healed very soon. Austin has had some new problems in the last 2 weeks. I am sure he will reply to you too. He had allergic reaction to contrast from CTA that sent him to ER, took a week to recover. This week he had severe reaction to Ciprofloxacin. And a few other issues he may choose to share with you. Thankful he has this group!
God bless you.

Thanks. As for Austin, I hope he’s doing better. One thing I’ve learned from having this condition and reading about it here, is that the problem doesn’t go away easily. Over time, I think Austin’s condition will improve. It might just take a few procedures. The contrast has been something that hasn’t been pleasant. Although I didn’t have allergic reactions but it left me feeling dehydrated. I have heard the contrast could affect the health of your kidneys if overused, but who knows how much is too much. I know I’ve had a lot of it over the past 8 or 9 months.

Hi, Mrs. Noel. I am sorry to hear of Austin's recent problems! Looking fwd to hearing from him soon.

My daughter (no AVM) is so allergic to so many meds that she gets a small trial dose when she starts something new. As a small child she developed immediate hives when she first had egg yolk, then again with a sulfa drug. She carries Benadryl with her and an epi-pen. I am just relating how difficult to be allergic to so many meds. I never thought to tell her of IV Dyes. Give my best to Austin.

Wow! A lot happened in the last few days! Glad you had the open-cut surgery for the aneurysm to be removed. Wishing you an easy recovery! I sincerely hope your AVM troubles will be healed now.

Re the dyes, they do bloodwork to assess kidney function now. So no immediate age cut-off as I previously thought.

Thank you. My Radiologist feels that I will be fine with the contrast. I did hear from another doctor that it can cause problems years later, but just like anything else there are multiple differing opinions.

Hi Austin,

Just checking in to see how things are. Last I heard you were having allergic reactions to the contrast from CT scans. Hopefully things are better. Has your AVM been addressed yet?


Hey, How are you doing? I heard a month ago that you were done with the avm for now. That’s encouraging! The AVM is still supposedly closed. I am still struggling with some health stuff. I am seeing a neuro. Keep me in your prayers.

I did create a you tube page with parents. Google: Austin Noel Piano
It is under austin noel piano jam and there is about 15 piano videos of me. It needs some work though.

My dad’s new company “Integrity Builders” is going ok. We had all this flooding so there are some renovation opportunies.

Thanks for checking in, God bless,

I’m glad to hear the AVM is gone. I’ll be praying for you to get past these other issues. Although my AVM is gone and I’ve had surgery to remove the large aneurysm, I had a seroma (fluid filled sac) develop post surgery that won’t seem to go away. I currently have a drain coming out of my pelvic area to try to “dry it out”. However, if I can get past this, my ordeal should hopefully be over. That’s really cool that you play piano and set up a YouTube page. I played violin growing up and my brother and sister played piano like you. Between your dad’s line of work and mine, our music background, your ties to central Florida and our pelvic AVM’s I’d say we have a lot in common. Although I think we both could have done without the AVM’s! Anyway, great to hear from you.

Hey, yeah I think the AVMs fine for now but have a lot of issue. I’m glad to hear your doing ok with that. It sounds like a mess having the drain in; that doesn’t sound like fun. Is it coming out soon.
We did sign up for a chance to win $5,000 every week for life, don’t expect to get it but if you’ve got a pelvic AVM there is not much more unlikely.
Do you still play music? Good to hear from you.