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AVM Survivors Network

Introducing myself

Hi everyone. My name is Neshka, I’m new here. I have an AVM located on the right cheek and nose. It starded to grow in 2008 when I was 21. At first there was a tiny red spot near the right nostril, followed by another on the nose and a third near the inner corner of the right eye. Since then I gone to laser treatement twice in 2011 and 3 prosedures in 2015. There was prety good effect, but over the past two years AVM strats to grow rapidly. Last year 2019 I had 2 embolizations with coils (I have over 20 coils in my face), one sclerotherapy with alchohol and surgery to remove the AVM, but I still feel pulsation near the right nostril and I there is a red stain. The surgery was on 11/27/2019, I don’t know if it’s too early to notice the results but I’m litle bit disappointed. The doctors promised that in the end my right side would look like the left side but nothing like this happend. I worry this pulsation will reexpand and all the work will be in vain. I’m considering laser treatment to remove whats left. What do you think - is this a good idea? And I want to have kids but not sure what to do. Here in my country surrogacy is illegal. Do you think pregnancy will be ok with AVM?

Hello @Neshka Neshka Welcome to the group. I am so sorry that your AVM has grown over the last 2 years. My AVM is actually a DAVF and in my head so I cant really comment on facial avms but I am sure someone will from the group. Here is the USA Dr Michael Lawton is considered the number one dr and he is now at the Barrow Hospital in Arizona. I believe they do remote consults. I would ask your dr about complications with pregnancy. I know a few people outside of the group who actually got blood clots in the brain during pregnancy. My doctors never told me I couldnt get pregnant but I also never asked about it either.
Angela

Neshka,

Welcome to the group! Facial AVMs do seem to be the most difficult things. We do have a number of members in our @Facial AVM group who I hope will read your story and be able to offer support.

Like Angela, my AVM is inside my skull, so perhaps less liable to disruption than something on so mobile a location as the face.

You may also find the stories of other Facial AVM folk if you look for the Types of AVMs category on the home page.

Very best wishes,

Richard

Hi Neshka and welcome to community. I have a brain AVM and can only speak of my own experience. But I couldn’t bear the thought of not having children and have had 2 pregnancies (and healthy children). The only advice I was given is (a) make sure you take folic acid supplements if available from 3 months before you get pregnant and (b) (again if possible) give birth by C-Section due to the pressure of pushing on my AVM. Best of luck.

Hi Neska, I also have a peripheral AVM. Mine is in my arm, up to my neck. I have had two pregnancies and three children (one set of twins!). The best thing to seek some advice from your own doctor, but things to note. AVMs tends to worsen when there are hormonal changes such as during puberty and pregnancy. In both cases the level of blood in the body also changes. I was on blood thinners during my pregnancies (I am now on them all the time as they help with my pain). Clexane which i inject everyday. This helped to avoid blood clots. Any worsening of my AVM was worth it for my amazing children. Everyone has to make their individual choices, and I feel for you having an AVM on your face. I hope this helps.