Medical Fund AVM treatment
Donation protected
I had a youcaring with many updates of my journey but they sold the company to gofundme so that’s why I’m making this account.
My names Katie, I was born with an avm, which stands for an arteriovenous malformation. AVMs are a rare condition when you are being formed in the womb during the nerve making process something happens and balls of nerves and vessels become a mass. Most are found in the brain and spine and lungs but on rare occasions they’re in extremities. Mine is in my left foot. When I was 8 we decided to have the tumor removed since it was causing me to not be able to tolerate shoes. We found a doctor that my pediatrician recommended, he said it would be a simple procedure (he didn’t say what it was besides a mass it had no name then) and I would have a small skin graft and a small scar. No biggie right? Well wrong. Very wrong. He completely butchered my foot, he thought it was the size of a quarter but instead was a golfball. He said it went great and I was completely rid of it and I’d heal up good. Nope that didn’t happen at all. I knew something was wrong when I start walking again, I couldn’t put my foot all the way down flat instead I was walking on the side of the bone. I went on with life with doctors saying it was simply scar tissue and needed physical therapy to loosen it up. I tried and tried and tried to do it but it only made things worse so I gave up, I continued to walk on the side of my foot and be in severe unimaginable pain that everyone thought I was exaggerating. Finally at the age of 21 I broke down while I was working and couldn’t do it anymore I’ve not been able to stand long, walk long periods, even sitting causes pain where the blood rushes to feet. I found a local doctor who said was willing to look, I go in only for him to say it was nothing major but he’d do an mri to clear my mind. Called back the next day to be told to come in, there it was the monster lit up like a Christmas tree, the doctor who did my surgery never removed the tumor he only went in cut tendons making the mobility and stretch of my foot non existent. all records are lost, there is no name, there is no records I ever had surgery. The new doctor said he couldn’t help me but he would send me to Vanderbilt to see a head orthopedic oncologist. I went to see her weeks later only for her to say I had 3 options. 1) compression (I had tried that many times with no relief or results) 2) removal that only had a 5% chance to take and she wasn’t even comfortable doing it because the tumor had taken over 90% of my foot into my ankle and I’d have to have a complete rebuild of muscles and tissue. 3) radiation treatment injections done by another doctor at Vanderbilt children’s. But the outcome was one I didn’t expect to hear and that was only true fix would be amputation of below the knee. Wow talk about the rug being pulled out from under you. I tried to radiation treatment for 4 years! Every 8 weeks, on a walker/crutches for 3 weeks after each procedure. I was put to sleep for each one and they said I had a choice of continuing or making the decision when I was ready for the amputation. I have stopped treatment for now so I can give my body a break from all the trauma it goes through and have time to figure out when I’m ready to say the words. I’m not able to stand, walk, or even sit long. My foot has to be elevated a lot and causes massive pain during many days. On top of this I have other medical conditions that have been discovered. One being a migraine condition called “pseudo tumor cerebi “ or “fake brain tumor” I have all symptoms of a brain tumor without an actual tumor there. Spinal fluid builds up on my brain causing pressure and pain that sends me into a downward spiral of nausea, loss of vision, and excruciating pain. I have them multiple times a week, and when they hit I have to be in a dark room. No sound. No movement. Just try and make it through them. I also have an autoimmune disorder that they’re trying to pinpoint which they’re looking at it being hashimotos right now. I have PCOS which causes a ton of issues on its own. Chronic anemia, from severe bleeding from my PCOS and from a bleeding condition that my hematologist is stumped on what it could be. My clotting factors are off, and my red blood cells never grew they stayed baby sized. So I don’t hold iron right. So after all this you can imagine the weight of medical bills. My insurance is close to $400 a month and they barely cover anything I need. I’m drowning in even more stress on top of what I already physically go through on a daily basis. I never expected having to ask for help but here I am. If you took the time to read my story thank you so much it really means the world to me. Sharing this to get more awareness out there of AVMs and the lack of studies on them especially extremity AVMs. Prayers are always welcome as well they’re just as important. ❤️
My names Katie, I was born with an avm, which stands for an arteriovenous malformation. AVMs are a rare condition when you are being formed in the womb during the nerve making process something happens and balls of nerves and vessels become a mass. Most are found in the brain and spine and lungs but on rare occasions they’re in extremities. Mine is in my left foot. When I was 8 we decided to have the tumor removed since it was causing me to not be able to tolerate shoes. We found a doctor that my pediatrician recommended, he said it would be a simple procedure (he didn’t say what it was besides a mass it had no name then) and I would have a small skin graft and a small scar. No biggie right? Well wrong. Very wrong. He completely butchered my foot, he thought it was the size of a quarter but instead was a golfball. He said it went great and I was completely rid of it and I’d heal up good. Nope that didn’t happen at all. I knew something was wrong when I start walking again, I couldn’t put my foot all the way down flat instead I was walking on the side of the bone. I went on with life with doctors saying it was simply scar tissue and needed physical therapy to loosen it up. I tried and tried and tried to do it but it only made things worse so I gave up, I continued to walk on the side of my foot and be in severe unimaginable pain that everyone thought I was exaggerating. Finally at the age of 21 I broke down while I was working and couldn’t do it anymore I’ve not been able to stand long, walk long periods, even sitting causes pain where the blood rushes to feet. I found a local doctor who said was willing to look, I go in only for him to say it was nothing major but he’d do an mri to clear my mind. Called back the next day to be told to come in, there it was the monster lit up like a Christmas tree, the doctor who did my surgery never removed the tumor he only went in cut tendons making the mobility and stretch of my foot non existent. all records are lost, there is no name, there is no records I ever had surgery. The new doctor said he couldn’t help me but he would send me to Vanderbilt to see a head orthopedic oncologist. I went to see her weeks later only for her to say I had 3 options. 1) compression (I had tried that many times with no relief or results) 2) removal that only had a 5% chance to take and she wasn’t even comfortable doing it because the tumor had taken over 90% of my foot into my ankle and I’d have to have a complete rebuild of muscles and tissue. 3) radiation treatment injections done by another doctor at Vanderbilt children’s. But the outcome was one I didn’t expect to hear and that was only true fix would be amputation of below the knee. Wow talk about the rug being pulled out from under you. I tried to radiation treatment for 4 years! Every 8 weeks, on a walker/crutches for 3 weeks after each procedure. I was put to sleep for each one and they said I had a choice of continuing or making the decision when I was ready for the amputation. I have stopped treatment for now so I can give my body a break from all the trauma it goes through and have time to figure out when I’m ready to say the words. I’m not able to stand, walk, or even sit long. My foot has to be elevated a lot and causes massive pain during many days. On top of this I have other medical conditions that have been discovered. One being a migraine condition called “pseudo tumor cerebi “ or “fake brain tumor” I have all symptoms of a brain tumor without an actual tumor there. Spinal fluid builds up on my brain causing pressure and pain that sends me into a downward spiral of nausea, loss of vision, and excruciating pain. I have them multiple times a week, and when they hit I have to be in a dark room. No sound. No movement. Just try and make it through them. I also have an autoimmune disorder that they’re trying to pinpoint which they’re looking at it being hashimotos right now. I have PCOS which causes a ton of issues on its own. Chronic anemia, from severe bleeding from my PCOS and from a bleeding condition that my hematologist is stumped on what it could be. My clotting factors are off, and my red blood cells never grew they stayed baby sized. So I don’t hold iron right. So after all this you can imagine the weight of medical bills. My insurance is close to $400 a month and they barely cover anything I need. I’m drowning in even more stress on top of what I already physically go through on a daily basis. I never expected having to ask for help but here I am. If you took the time to read my story thank you so much it really means the world to me. Sharing this to get more awareness out there of AVMs and the lack of studies on them especially extremity AVMs. Prayers are always welcome as well they’re just as important. ❤️
Organizer
Katie Ann
Organizer
Johnson City, TN
