Livin' with a Venous Malformation..
I have had my story posted on here, but I wanted to update it.
I'm 29 years old and wasn't diagnosed (correctly!) until I was 26. I have a VM throughout my left elbow/forearm there isn't discoloration but rather just a lump.
When I was a kid, I broke my elbow twice within about 15 weeks, and my problems started from that point on. I was 9 or 10 when I first broke it, it was a simple break didn't require surgery just a cast. Same for the second time, although that was just a hairline fracture that saw me in a "half cast".
Not much longer after that the problems started, random bruising was the biggest problem. I would get massive bruises on my arm they would just appear and would last about 2 weeks or so. That went on for a long time and every doctor just said it was a bruise, that I had to have fallen and just wasn't telling my parents. Also, had the doctor who called CPS (Child Protective Services) can't fault him for that but it did drive my parents insane. After a few months with the bruising it became an expected occurence and they stopped taking me to the doctor for it.
When I was about 14, things got worse. I started having the bruises (although more frequent) and intense and severe swelling, to the point where my arm looked fake and I was unable to move it. Again, doctors said it was something, but they didn't know what. I had every test one could imagine, and at one point the only course of treatment they suggested was amputation. They felt that it wouldn't get better, they didn't know exactly what it was so just cut it off. For the first time in my life I saw my father blow his top! Security actually removed us from the hospital.
When, I graduated high school and started working (got my own health insurance) I just ignored the problem, I pretended it didn't exist! Not the best course of action but I was sick of the doctor appointments that led to nothing but endless bills.
Then when I was 26, it became the worst it had ever been. My arm swelled to an epic size! It actually looked like a prosthetic (spelling?) arm. It had a waxy apperance and was just downright disturbing. Something out of a Sci-Fi flick.
I was new to Georgia at the point, had just moved from Long Island NY. So, needless to say I didn't have a doctor. So I picked one from the phone book, who would have guessed she would have become my hero! She was shocked by both my arm and my medical history, she wouldn't rest until she found out what was wrong. It led to many more tests CT Scans,MRIs,Ultrasounds,x-rays and blood tests. This was over about a 3 month span I was then referred to an orthopadiec surgeon, who said I had a intramuscular hemangioma. After much research I realized that hemangiomas only occur in children. But, I didn't think much of it, once the arteriogram was done they came back with a diagnosis of an AVM. Which led to seeing a vascular surgeon who said it was an AV Fistula ( a direct connection between the vein and artery) which could lead to serious heart issues. So he sent me over to the hospital for angiogram STAT. First time, I walked into a hospital and was seen right away!
That led to a diagnosis of a Venous Malformation, that wasn't treatable and according to the interventional radiologist I needed to suck it up and deal with the pain but to be thankful that it wasn't on my face.
Which had me shocked, so I started my internet research found this site and a few others which led me to my other hero Dr.Wayne Yakes!
Who said, that I was in fact treatable and in the end was "cured" for the most part that is.
I had 2 treatments of sclerotherapy and have since had an MRI which shows that the VM is now too small to treat.
Although, I still have some occasional pain and swelling, I can tolerate have learned what triggers my symptoms and can treat it with asprin and anti-inflammatories (spelling?)
I hope this helps someone in a similar position.
You can get through it and it can be beaten!