I've been a part of this site for a couple of months now. After being diagnosed with peripheral AVM a few months ago I sought for as much information as I could get, which was not a great deal. The doctors didn't know much about what they were dealing with (I saw five different doctors before one of them could explain much of anything to me about what was going on). I've been dealing with a foot issue for fourteen years. I saw a vascular surgeon when I was 18 and this problem got misdiagnosed, and in being misdiagnosed she took a vein from that leg and ended up making the problem worse.
I have two ulcers on my foot, a toe nail that I tore up when I tripped, and all three arteries in my lower leg are diseased. There is nothing anyone can do for me other than to amputate my leg. It's been a lot of to take in in such a short amount of time, but I've come to terms with the fact that I am going to lose my leg. I'm already moving forward in that process. It's not an emotionally easy decision to make and it's been hard, but after a lot of thought and discussion it seemed like the best decision for me to get my life back.
That being said, it's been a frustrating process which I am sure that all of you can understand. You've all been through this in some form and it's been very helpful to hear your stories and your frustrations even if the disease manifests itself differently. I faced doctors not knowing what they were dealing. I felt like I was stuck in my own personal episode of House. I've had to fight for answers and I had one doctor flat out tell me, there is nothing he could do for me or my pain and that I was just going to have to live with it. He told me that they don't write books about AVM because 10,000 people don't have it. No one would explain to me what was actually happening, no one was giving me a potential solution even if that solution meant amputation. I felt dismissed by everyone I sought help from. These were all factors of my frustration with dealing with my avm.
My point for posting this is that I'm a film student at the Johnny Carson School of Theatre and Film. When all of this started going down and things were starting to lead to the very real possibility I was going to have to amputate my leg my adviser suggested I film the process. At the time he suggested it it was just a means to do something creative with something I was really struggling with emotionally. Since then it's turned into much more. I am creating a documentary through my story and through my journey. I am not sure right now what the end result of this project will be or what exactly of what I've filmed will make it into the final product, but I'd like to extend the offer to the rest of you if there is something you'd like to share to be a potential part of this massive project of mine: a thought, a feeling... anything really. If anything, your words may just be inspirational and supportive, but you do not have to share anything if you don't want to either.
-K. Smith
Hello K Smith
Thank you for sharing your story here and being so brave to film your journey.
I think for me when I told my dr about my symptoms which were whooshing, passing out and pain he said it would be really rare for me to have 2 rare things. Since I had a rare stroke (non avm related) a 6 months prior to me telling him. Luckily I found this site and found out who the dr was at Stanford if I did have it- Of course I did. That was 5 years ago. I still get weird symptoms and pain -they just dont know that much or can aid in what to do with me. They even say my severe stroke does not show up on the MRIs now which is great but I still have brain and leg pain. So frustration in one emotion but I do feel so greatful that I can walk etc - I do have hope with stem cell clinical trials that are going on right now for paralysis in stroke patients will one day help avm patients .
I am so sorry to hear about you having to have your leg removed.
I think most people think we are fine and dont understand the daily struggles we have with our health.
Hugs
Angela
I look fwd to viewing your film. Wish it was fiction, tho. You sound like an elderly diabetic with those ulcers on foot; but you know @ the AVM. I did not catch your age? I am 60.
You mentioned amputation of leg; is it possible that this might involve the area below the knee? Prosthetics work easier BTK.
Maybe my story might be an allegory for you.
I had to have a dble mastectomy due to breast cancer. It felt like an amputation, but technically only extremities are amputated. If it helps any, I focused on the removal of the diseased portion of my body. That was 6 yrs ago; I never look back. I will admit that I had a very difficult time looking post-op. I lost a part of myself! I had to grieve. But I gained a relatively normal life; without all the testing. It was a wonderful decision. My oncologist was a recent grad of Sloane-Kettering. Feel free to use anything I wrote.
If you join extremities group, you will get perhaps more replies. There is someone in that group who just had an amputation, I believe. Perhaps it was a child. Search "amputation"; it would be a post within past month.
From this post, I'm not sure if you have ever seen an AVM specialist? Look at birthmark.org for names. I am not certain if you are in a situation where cultures are showing micro-organisms that are resistant to anti-biotics? You don't need to share any more than you have.
I came back to your story because I concluded that amputation is your only option. There is hyperbaric chamber then IR specialists. Maybe you have already gone thru that path; or maybe you are still with doctors who don't know much @ AVMs. Please bear with me; I mean well.
I am twenty eight. I ended up getting the ulcer on my foot when I scraped my foot helping my brother in law move a piano into the house. At the time it had been a superficial scrape, nothing that shouldn't have just healed up in a week or two. That was two years ago, it never healed. In fact, it slowly got worse until it got infected and became the ulcer that it is. I got the second one from scratching my foot when it itched not long after that.
Of course when I went to the doctor about the first wound they checked if I was diabetic. The next doctor I went to checked if I was diabetic... every doctor I saw until I was finally diagnosed checked if I was diabetic. I am not. The problem with having a peripheral AVM in the area that I do is that it creates those ulcers because the pressure in the area is too high to allow oxygenated blood to get to the area and the tissue starts to break down.
The very few people that I've read about having a peripheral AVMs in the area that I do... in the legs or ankles all ended up having ulcers on their feet for the same reason.
As frustrating as the ulcers are, they are the reason my AVM was discovered in the first place. Took four months and four doctors to figure out the problem, but eventually one of them realized I had an unusual pulse in my foot- a thrill as he called it, and he called for an ultrasound of my leg. That's when they discovered how bad the problem actually was.
I've since seen three more doctors. Amputation is my only option because the problem is only going to get worse and right now I don't know if it's BK or AK. I am hoping for BK because I was initially told the aneurystic arteries... where they are diseased and threatening to burst started in the middle of my calf and down. But it really depends on where those diseased arteries start. If they are low enough then it'll be BK, but if they come up too high it might be AK. This is where my vascular Surgeon and my pediastrist have to discuss because I don't fully know at this point.
I've already spoken with the young woman who recently had a BKA. I read her story before I had learned that was my only route. Though the doctors in my area don't know much about AVM, I have spoken with an AVM specialist at Mayo Clinic, the result was the same. The diseased part of my body was beyond saving. All three of the arteries in my lowering leg are aneurystic and threatening to burst from the pressure. The area where the abnormal connections are is too difficult to get to and because I already have wounds on my foot that won't heal from the pressure of the AVM, they won't even chance going in and trying to cut the connections apart.
All of the research I've done shows that the hyperbaric chamber (which has been great for diabetics with ulcers, I know someone that was helped through that) is actually likely to make my problem worse because I'm not suffering from low blood flow or circulation in my leg, but actually too much pressure.
Believe me, I did a great deal of research and talking to a lot of doctors about this problem. I've seen seven and counting now since the whole problem started. I living smack dab in the middle of the US, but as it happens there just isn't an AVM specialist anywhere near me. I've seen a vascular surgeon, though not a specialist, does know what AVM is. I've sent the images to the specialist at Mayo Clinic and discussed with him, I've seen two podiatrists now.
I'm actually fairly well acquainted with this site now. I've spent many a sleepless night lurking around and reading other people's stories that were similar to my own. The few that I found on the site anyway. I was just sharing, generically, the project I am tackling. That is all.
Got it. "You don't need to share any more than you have" was in my response. You don't have to justify any decision; I am just trying to be supportive by offering info. Somehow I thought you were new to this website.
All the best!