Good morning all. New member here. I have avm in my left arm from the shoulder to hand with added calcifications around the lesions. Some deep tissue, some near the surface. My childhood doctors just called them fatty tumors. I didn't get a real diagnosis until I was 18, and the recommendation was to not interfere. 53 years with no treatments, no relief, no help, and never ever meeting anyone with the same problem. Until yesterday I had no idea there were others. God bless you all, I feel your pain as we speak (every single day!). I look forward to hearing how you all deal with the pain and swelling, and hope I can be a help myself.
Hello Lefty- Welcome to the group!
I noticed my AVM initially in the area of my foot sole known as the plantar fascia- basically in front of the heel. It became pretty obvious and annoying ten years ago- a small bruise, tenderness/pain and plenty of heat. Nothing changed for basically ten years- bruise, occasional pain, ever-present "fever" in the foot. Around Christmas time 2015 I went skiing with friends and noticed a bit more pain/swelling. Went skiing again around January 10th and must have experienced a vascular bleed of my AVM. I went to see a Podiatrist who ordered a MRI. The radiologist happened to be an interventional radiologist to recognized and diagnosed my AVM... who knew there was such a thing?
Pain management- I try to reduce the heat, which seems to reduce the inflammation and stabbing pain associated with my AVM when it is most inflamed. For me this means, slipping my shoe off when I drive, sleeping with my foot uncovered- letting the nighttime air cool it down, applying zip locked bags of ice (using an ace wrap) directly to the AVM (I keep a layer of sock on to prevent freezer burning my skin) and occasionally I take Aleve or Advil to reduce the inflammation and pain-it definitely helps. A word of caution here- I have read that Ibuprofen (the active ingredient in Aleve and Advil) can act as a blood thinner which may encourage more AVM bleeding if your AVM is in bleeding mode.
You can search this website using the search box in the top right corner for others input on many, many topics going back several years. I have found it helpful.
AVM's are still a mystery to us in terms of causes, best treatments, etc...
My AVM was in aggressive growth and inflammation mode for about 5 or 6 weeks and then just as aggressively has receded. Why did it recede? I don't know. I imagine part of the recession was due to me reducing walking on it. It may have been that it took several weeks for my body to absorb the fluid/blood leaked by my AVM from the skiing incident in early January. I have no idea how long it may stay cooler/smaller/less shooting pain. While I don't understand it, I am thankful that for the moment I don't have to dramatically alter life activities that are normal for me (though I have given up jogging on a treadmill and skiing permanently).
This is all pretty amazing at the moment. Based on the recommendation of the Dr. I saw at 18, I never pursued another option. I've practiced trial and error my whole life trying to find relief. Thank you for the Ibuprofen tip. I've never taken pain meds for this, but have wished there was something many times. Having read through this site, I consider myself blessed to have this in my arm, and not a leg or foot. Knowing all too well the pain and disability of avm, I truly feel for you.
Hi Lefty. Not sure about your whole condition, but I have a port wine stain on my whole arm also, which turns out to be an AVM also. I didn,t have problems with it until I had laser surgery to have it removed for cosmetic purposes. It was pinkish red, but turned purple and inflamed. The laser surgery blocked the venous drainage and did a lot of har. Ma\ybe thats why sometimes they don,t do alchol injections or laser surgerys as it does more harm. Compression theropy can be the only help. Make sure you see an avm specialist at a clinic as there are many tests to be performed, and not just a dermatoligist or vascular doctor. A multi team is needed as they are very complicated.
Terry
Wow, any responsibility taken by the laser guy? You'd think they would know what they were treating before they started. I can't imagine.
I did discover compression garments a couple of years ago, and they do help. Not too interested in having any of the common procedures done. I'm not a big fan of doctors, and from the sounds of what I've read, they can do as much harm as good.
I don't have what would be considered a port wine stain, but you can see the pooling and lesions under the skin in some places. My biggest problem is the swelling which causes debilitating pain.
Hello Lefty,
You might search food impacts on AVM's here. There are a number of posts that reference the inflammatory impact things like fried foods and sugar have on AVM's. I think there may be something to this as I notice that my AVM becomes more irritated and painful on the days that I eat too much processed sugars (I like snack sized chocolate bars). On the days I avoid them altogether the symptoms seem to go away...
Agreed. I have found that caffeine aggravates it. Coke and chocolate especially. I'm not a heavy sweets eater anyway.
Isn't it funny how these things have a mind of their own. One day you hardly notice it, and the next you want to cut your limb off.
Hi, your comment above is so true! I have an AVM throughout my foot. I find that compression stockings help with the pain and swelling. Also elevation and ice when in a bad phase. I also find that being in the foot the AVM prefers being gently active or being elevated, standing still makes it swell and throb. I also have always had skin breakdown and have had several skin grafts due to the build up of scar tissue, the last one caused proliferation of the AVM and has still not healed and so agree that avoiding intervention until necessary is best. I also only take painkillers if desperate.
Sorry to hear that. I feel bad for you all that have this in the feet and legs.
I had a real winner doctor. He told me 4 times it would come out completely, then tricked me to signing an expected but not guaranteed document, that I didn,t even read. Sounds like you don,t have a capillary problem, so it would still be worth seeing an avm clinic specialist with all the doctors and tests. They know a lot more now than 10 years ago. Mostly be experimenting on people like me. lol