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AVM Survivors Network

Alternative treatment , naturopath? So confused


#1

Hi all , first off I am so thankful to have found a site like this , the internet can be so amazing. I am starting to think I am the rarest of the rarest. In May of 2015 only a few weeks after getting married I found out I was pregnant , which turned out to be a molar pregnancy (there’s a forum for those too!) 2 d&cs later , the invasive tissue spread to my lungs , I completed chemo in December of 2015. Soon after finding out I am highly allergic to methotrexate (the chemo I was receiveing) go figure. Was given the green light after a year of follow ups with my oncologist to get pregnant again .

June 2017 I had an ultrasound at 7weeks because of my history they wanted to be proactive. The baby turned out to be a blighted ovam. That’s when they found the uavm. 3 more ultrasounds and no passing naturally of the pregnancy product they sent me up for an MRI. The gyny wouldn’t touch me with a ten foot pole for another d&c said I would absolutely hemmorage resulting in an emergency hysterectomy. They administered the miscarriage drug and it was a hurry up and wait with a team of radiologists and doctors and nurses in stand by. All went well.

I just had a consult with an intervenial radiologist two days ago . He presented me with options. Option one:do nothing , get pregnant hemmorage and die; or eventually die of heart failure because of the blood going directly to it constantly . Option 2 : hysterectomy. I’m 29 years old if I could avoid that I think I will but that option feels like the easy way out. Option 3: have the embolization done. My problem with option three is they didn’t have any concrete scenarios to present me and they won’t know how it’s going to play out until they’re in there. The embolization materials could get away from them and go straight to my lungs, resulting in eventual death. Or up to my brain resulting in stroke. They don’t know if it’s a nest of veins or one massive one. They don’t know what kind of material they’ll use until they’re in there. It’s not guaranteed to work . I’m terrified and confused if I should even do it. He told me these things don’t just go away but I’ve read in a few other posts some have . My other issue is i have no symptoms whats so ever … no bleeding no cramping. Mind you i havent had a regular period yet . Not sure when that is even supposed to happen. No one seems to have the answer for that .

Has there ever been an alternative treatment , some naturopath treatment or something ? I feel with my luck , anything that can to wrong will.
Any insight is appreciated, feeling in the dark.


#2

There is an option 4 and and an option 5. But its not “natural” there isn’t anything you can take to fix whats broke

Option 4: have the emobilization done in the OR with a gyno standing by and proceed with the Hysterectomy if the IR guy is uncomfortable at any point

Option 5: much the same as option 2. Trust me I understand the reluctance. My wife had hers at 30. It was the most difficult time in our lives. (considering I had come to the conclusion I had to leave the career I had spent years preparing for) everything was a mess. Our plans since Junior High were a large family.Dare I say a HUGE family. I realized at that point my wife was my world and that I simply couldn’t proceed without her.

Through the help of some great folks we learned we could still have the life we wanted only different. We ended up with a HUGE family 10 kids to be exact. They all came potty trained… so we got right to the fun stuff. We had a change in career that turned out amazing.

As far as the easy way out, they will leave the ovaries, so you aren’t off scott free. I don’t mean to be glib or trite. but aside from the bearing children thing which we learned has nothing to do with making family. One of the statements the old guy who did my wifes surgery made became true. In the hundreds/thousands of Hysterectomies he performed, not one time did any of his patients come to him and ask for their uterus back.

Don’t underestimate what an IR doc can do. I can promise you no intervention/surgery is exactly text book. If folks knew how often they make it up as they go, NO ONE would consent. They fact you have a guy admitting it should actually be encouraging not scary.

As far as the period thing, that is as much controlled by your immune system as anything. You body knows that is NOT a good thing for you right now…

Our thoughts and prayers are with you.

TJ


#3

Thank you I sure appreciate your input , gave me alot to think about !! It’s nice to hear other people’s stories