Brand new girl here--- am I the only one with an AVM in my leg?

I'm so excited to find so many people who know what AVM means without my having to explain it! Unfortunately, I may not have found many (if any) who are also dealing with an AVM in their leg as I am. My AVM is largely without symptoms (always hot to the touch and pulsating and slightly discolored, but not usually problematic or causing much pain).

My trouble is that this AVM was first felt during puberty, diagnosed during pregnancy, and now as I enter peri-menapause, is acting up again. Is this typical to have pain and discomfort during hormonal activity and subsequent increase in blood flow?

Also, I have never found a doctor who could confirm this, but I also have consistent issues with very rapid heartbeat that coincide with hormonal activity, but not always. Are these two issues related for anyone else??

Lastly, I'm not sure I understand the risks involved if I just never have this AWM treated. I have seen an interventional radiologist named Dr. Robert J. Rosen several times over the past 12 years to maintain contact with SOMEONE who gets it who works out of Lenox Hill Hospital in NYC. He specializes in embolization. I have been considering having the procedure done for 12 years...still haven't decided....any suggestions?

Nice to "meet" you all. :) ~Catherine

Welcome to the site Catherine.

I know several members have AVMs in extremities. Hopefully some of them will post. You might also type "leg" in the search block at the upper right of this screen. That should take you to those posted about leg AVMs.

Hope this helps.

Ron, KSSS

Thanks a bunch. :slight_smile: will do. ~Catherine



Ron, KS said:

Welcome to the site Catherine.

I know several members have AVMs in extremities. Hopefully some of them will post. You might also type "leg" in the search block at the upper right of this screen. That should take you to those posted about leg AVMs.

Hope this helps.

Ron, KSSS

Hi Catharine. Please go to the main page...scroll down to the lower right side...join the group...

extremityavms. Bet you find someone there who has the same problem. Good Luck!

Catherine. The only one I know of off the top of my head is Carter. His mom (Pamela) has a page here: http://www.avmsurvivors.org/profile/Pamelatrudeau?xg_source=profiles_memberList. Also, here is the link to the extremity AVM group: http://www.avmsurvivors.org/group/extremityavms. I know there are others with AVMs in the leg but I can't recall them off the top of my head at the moment. Good luck.

Hi Catherine,

I know that there are several people in Extremity AVM's who have AVMs in their legs. Everyone would be very happy for you to join our group in case you haven't already.

Take care,
Debbie

Wow you posted this a little more than a year ago but welcome anyway! I didn't have my AVM in my leg, but did have brain surgery. Looks like you got some great advice and everyone pointed out the extremities group. Hope you joined or will join, hang in there and welcome! (ok it's a little late but still...) :)