Hello everyone, I hope that all is well for you.

Things that has happened so far this year

- I started working as a dentist (I worked full-time for about 3 months, took a lot of time off for the surgery)

-06/04/2010 I had the tissue expander inserted in my left forearm in preparation for a radial forearm flap. Immediately after surgery I had a lot of swelling, limited movement of arm, but after a few weeks they were no longer a problem. Every 2 weeks I had saline injections into the tissue expander. Between May-Jul I went back to work part-time.

The aim of a tissue expander was to create more skin to make the lining of the lip and to avoid needing a graft for the donor site.

-21/07/2010 I had an embolisation

-23/07/2010 I had surgery at St. Vincent's hospital, Melbourne. Mr Penington removed the AVM (took about 2-3 hours), after that Mr Grinsell did the reconstruction (inside of nose, part of nose, 2/3 of upper lip)-the free flap- which took about 8 hours. (I may post some photos of me in the future)

First 2 nights after surgery were very tough. I stayed in hospital for one week. So far virtually pain free.

In a few months time:

-An angiogram to check if they removed all the AVM (fingers crossed)

-Revision surgery.

Other things:

-In a few months I will get my genetic testing results for the RASA-1 gene. (which I think I have b/c of presence of an AVM and multiple capillary malformations)

-The genetic counsellor suggested getting my eyes tested, by brain& the rest of my body scanned for other AVMs. I cannot have MRI so the other way to investigate is CT angiography. At the moment I have so many things on my mind that I am happy to leave this until later.

Hey Mindy! So glad to hear that the surgery is done and that you are feeling good. What a huge ordeal though. So much done in such a short time. And wow, that picture is extraordinary!
I was so surprised by your “so far virtually pain free” sentence!!! Obviously after what was probably a fair (or more) amt of pain for those first two days and the rest of your time in the hospital. But how wonderful that you are feeling good only a week post op. I can’t imagine.
Fingers crossed over here for all of the AVM being gone. Is the revision surgery to go back and “fine tune” what they did last week once the swelling is gone and things have somewhat settled?
The Rasa-1 results are exciting. Not sure why, but I feel sorta like it’s exciting news one way or the other. I guess it doesn’t change much, but still nice to know.
Why no MRI’s? Ya, I wouldn’t worry about the CT angio until you are all better and healed and feeling good. No need to bother with that part right now. One thing down, then move on to other stuff.
So glad to see your post and to hear that things are looking positive! I’m very happy for you and hope that in a few months you will be able to claim AVM free!

Hi Shalon,
The first 2 nights were tough because they had to check on my every hour to make sure the flap is vital (by using a little ultrasound thingy), also they had to measure fluids in (IV) and out (urine) since they are an indication of how much fluids, blood etc travelling through the flap (the more the better). Also 2 days without food b/c they may need to rush me back to theatre if there is a clot or anything goes wrong with the flap. I could not sleep at night or during the day. My left arm was in a cast… It was mainly being very uncomfortable, but no pain.

Revision surgery is for fine tuning.
Went i was 11 i was living in Vietnam, i went to France for medical treatment and have a metal device put in my heart. Because I don’t have any records of the material, I was told it is safer not to have MRI.

I hope one day i can be AVM free… but i don’t know… with my history of surgeries I’m not that positive, but it’s always nice to hope.


Hi Mindy, Have just been reading your post to follow your progress. You have been through a lot, so pleased to know that all is going well. I hope things continue to improve for you as time goes by. I was also interested to hear about the genetic testing results you are awaiting. What is this RASA-1 gene? does this mean you are more likely to suffer from AVM’s? I haven’t heard of gene testing for AVM, but then their is a lot I haven’t heard of. Always learning!. Take care & enjoy each day. Cheers. Michelle :slight_smile:

Hi Michelle,
AVMs are usually not genetic, but in cases where an AVM is present together with multiple birthmarks on the skin it is usually genetic- with mutations on the RASA-1 gene.
Having this gene does not mean you have an avm. you may have nothing. you may have tiny birthmarks, or you may have avms. so there is a range. The genetic counseling ppl are very good to talk to. :slight_smile:

Hi Mindy,
Thanks for the explanation, all very interesting to learn. Hope all is going as well as can be for you. Take care. Cheers Michelle :slight_smile: