New Member Intro

Welcome & Help New Member Introductions
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Hey there! I’m Christolyn, Christy for short. I’m a new member to this group but known about “Avy” for about 10 years now. I haven’t been back to the doctor in a good 8 years. I have an AVM located on the left side of my tailbone, the left upper part of my cheeks. It branches off the arteries to my legs but not connected to my spine. When I went to the doctor back in 2013, they gave me a total of 3 options with outcomes.

  1. They could remove my AVM completely; leaving me paralized in both of my legs.
  2. They could go in and kill it and fill me with the dye that eats away dead vessels, but it would have eaten a hole in my back and I would have to have multiple skin graphs done periodically.
  3. We could do the emboilzations, which would try to stop the blood flow in and out of Avy.

So I went with option 3 a total of 3 times. All were unsuccessful and she rerouted herself each and every time. At that moment I was pretty much told there was nothing else they could do for her or me. I found out that I had Avy during my first and ONLY pregnancy. They told me that they are suprised that my delievery with my daughter was successful and suprised she didn’t erupt. I was then told that I physically can not handle having anymore children. So I pretty much was very distraught and I havnt been back to the doctor since. I live in Alabama and the doctor I visited was over a 2 and 1/2 hour drive. I need to go back for a check up but I’m just living with her. Knowing that if i were to knick that area I could bleed out before I could think twice about anything, but since I’ve been living with her for 10 years I’m just kinda living on a hope and a prayer. So far my daughter has not shown any signs of having an AVM and thats where I’m at with it all… so yeah! Nice to meet you all and I’m glad we’re not alone in this.

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Hi Christy, Welcome. There’s two parts to your situation-- emotional and physical.
You’ve been blessed by a successful birth and a healthy child. That should be your focus.
Your health is uncertain and that’s the case with everyone here. Until this point it seems you’ve been given pretty good advice by the docs. (By the way, I admire your commitment to understanding your options and risks. That’s a big task you took on very successfully.)
It’s because of your competence that I’m not going to mince words. Things can go south fast and you should prepare yourself emotionally.
I know I’m talking in a kind of abstract way so I’ll try to speak plainly, even bluntly. Your child is going to have a tougher time than most because you are struggling with very real pain and fear. That’s okay. She may become a terrific mother herself that can see how beautiful you are and how hard you struggled to show love when you yourself were suffering.
You do have a strong character and that’s obvious. My overall message is to give yourself credit for birthing a fine child and developing an understanding of your complex situation. Be grateful. My best wishes are with you in your struggle, Greg

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Thank you so much! I really appreciate that!

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Hi @ChristyD

Welcome to Avy Survivors!

Greg has done you a great welcome, so I think the main thing I want to do is to say you’re not alone! I’d say you have much in common with those in our @PelvicAndUterine AVM group and possibly some of the Extremity AVM group.

I hope we can help you stand together and, as Greg says, know when you’re being told information that is in line with what others have been told, too.

In general, AVMs are considered congenital, which means they are part of the random things that happen in everyone’s makeup in the womb. Some are linked to a genetic condition but it is rarer for these things to be inherited. You could ask your doc whether genetic testing seems relevant in your case.

Welcome on board!

Richard

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Hi and welcome!

I don’t want to give you false hopes but would like to share a bit of my experience.

The first vascular surgeon I saw for my AVM told me:

  1. I can’t do anything to treat or cure it
  2. It will only regrow with embolisation
  3. Any interventions are high risks
  4. We’ll monitor and do something only when you reach energency stage (bleed or heart failure) and hope for the best
  5. Things will only get worse as you age.

Nice.

Just to give you context, I have got a pelvic avm multiple feeders from left and right iliac artery. I saw 3D pictures of it for the first time 2 days ago and I haven’t seen anything like it. It’s span the width of my abdomen, the upper part of my abdomen is such a mass of tangled vessels it looks solid. It’s Jabba the Hutt in shape and size with a few more tentacles.

Now 4 years on I’ve had two embolisations, I am being put on Thalidomide to avoid regrowth and I am waiting for embolisation number 3.

I was 6 month away from a wheelchair when the first embolisation happened, couldn’t keep food down and was exhausted. That’s where I’d still be if I stayed with my first doctor.

How did this happen? Sheer luck. The IR at my local hospital new another IR who was an AVM specialist and asked me if it was ok to send my images to him. I am now with a research hospital in London (I am in UK) and one of the best, if not the best IR in the country for extremity/pelvic AVM. He is a magician in the theatre although, admittedly, he is pretty limited with everything else (mad genius type).

My point is: I know you’ve already had embolisation and it didn’t work but there are things such as thalidomide, sirolimus now to help with regrowth. Also, was your doctor good enough? Were you with a research hospital or a regional centre? Were they experts? Quite frankly, nowadays I wouldn’t trust that many physicians worldwide to touch me.

Just make sure that even if you have to live with Avy, like I have to with Jabba, you have exhausted all avenues, there’s nothing better than to regain some control in that relationship.

Lastly, people here are always saying get a second opinion, try this etc and it’s nice but I couldn’t help feeling that it wouldn’t work for me. Why the extra hassle? I was tired enough. I had enough on my plate. Now it’s happened to me ( I didn’t actually make it happen), they are right, it’s scary but worth it.

All the best.

Nathalie

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Well said

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I’ve had a 7 centimeter slow growing pelvic AVM randomly diagnosed in 2016. I have had four Kaiser specialists say no operation, wait for heart failure (I’m fine so far), don’t fall off a cliff or get in a serious car crash. Finally found Dr. Freed in Sacramento who is doing a diagnostic angiogram to see what’s going on. He will discuss embolization depending on the results. It’s so great hearing from other Pelvic AVM folks! Thanks!

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@lulahs I’ve added you to the Pelvic and Uterine group, so you’ll get a notification when members post new conversations in the Pelvic and Uterine category. Hopefully joining the group helps you guys to stand together even better.

Richard

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Thanks Dick. I thought I was a member. Now I am!

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Keep the faith.

That’s what I was dealing with before the first embolisation. From the front and then side

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Thank you Nathalie. I’m having exploratory angiogram 6/5 and should get better images to discuss emboloization.