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AVM Survivors Network

How to bear physical pain? Questions about AVM (on the leg)


#1

Hello everybody! :)

I'm 15-years-old and I have an AVM located on my leg - it goes from my buttock down to my knee. It is often a source of an intense pain which causes me to limp. My blood is also thicker - when I had a blood test a few years ago, I had d-dimer around 19 000 or so - while the healthy person's d-dimer should be about 500. The doctors called my mother from the hospital, terrified.
My last blood test was better, around 8 000.

I don't know much. There's a connection between AVM - blood clots - pain, but I don't really understand the process. Like, how come does AVM "produce" the blood clots? And how blood clotting cause pain - do the blood clots get stuck in the vessels, or something...?
If any of you has a more knowledge about it - please tell. That would help a lot.

However, one thing I know is the connection between the bloodstream and the pain - when I, for example, run too much, my leg hurts. When I sit too much, my leg also hurts.
A rule of "everything in moderation" fits just perfect here, but there is one more thing:

As we all know, during sleep, we don't move much. Thus, when I wake up in the morning, I often feel pain. When lying or sitting it is even bearable, but standing is the worst >_< The pain weakens after some time - usually about 5-6, sometimes longer, sometimes shorter.
Because of it, I often have to skip school - sitting still in the classroom is too painful, walking not being any better.
This is one of my biggest worries - my grades are dropping because of absences, and teachers (who know that my health is not alright, but they don't really know what is going on) are often all like "why aren't you coming to school? if you were in the school more often, your grades would be a lot better" - all pressing me to come to school, while I simply CAN'T.

Can you guys give me some advice? Anything is fine, really. I'm just so frustrated about my current situation I just can't stand it anymore...

Well, that's it. Thank you for reading it :)


#2

I am sorry that you are having to deal with this. You ask good questions. Have you posed these questions to your doctor? From my understanding, blood clots form when blood does not circulate adequately. This can cause acute pain and swelling. I do not have personal experience just a general understanding. I hope you find the answers you need. Good job in reaching out to others, you are wise to do so. There is a group here that may be helpful called Extremity and Non-Brain AVMS. You should pose your question to that group also. Wishing you the very best!


#3

I have and had avms in my right leg from my thight to my knee. before my surgeries I tried laying on my side and putting a pillow between my knees to help with the pressure, it helped a little unfortunately, I still havn't found anything that com0pletely got rid of the pain, just keep positioning yourself so it doesn't hurt as bad. Also you may want to try ice packs if you can stand the cold on it.also, YOU NEED TO SEE YOUR DOCTOR!!! blood clots can easily form. take my lesson on this I lost my vastis lateralis muscle do to a blood clot!!! and it was very painful... I don't want to scare you, but I want you to be aware of the seriousness of the situation!!so PLEASE SEE YOUR DOCTOR!!!!


#4

Sorry for the late response!
I'm so sorry for your lost :( Such an unfortunate situation! And I can imagine that the pain must've been unbearable! ;( Yet it's great that you didn't give up, so great ;)
Thank you for your advice. I tried to position myself so that it wouldn't hurt (as badly at least), but I haven't thought about putting a pillow in between. I tried the ice, but it helped for a while - after putting an ice pack away, and when the skin returned to the normal temperature, it was hurting again.
So, it really is more dangerous than it seems, isn't it? I remember going to various doctors, and their opinions were mixed: most of them said that I should indeed do something about it, cause it can lead to major thrombosis... And I remember that one guy who said "it is typical for your disease, no need to treat it" -_-

Anyway, thank you for help! I'll definitely talk about it with my doctor.
Best wishes! \(^3^)/


#5

Thank you for your kind words! Even general understanding is fine - everything, little by little will get me closer to solution about what to do.
Thank you so much & have a nice day~! (^u^)


#6

yes it is very dangerous!! you need to seek a specialist or at least a vein specialist who will refer you to a specialist! If you wait to get it treated until a thrombosis you could be in the same boat as me, again not trying to scare you, but it took me 3 years to get the doctors to listen to me and by then it was too late. so please seek a specialist! about the cold. I kept an ice pack on ALL the time!! do not use heat at all it will make swelling worse!! My prayers are with you and never give up!!!


#7

heres some info that might help you:
http://en.wikipedia.org/wiki/Arteriovenous_malformation
http://www.nhlbi.nih.gov/health/health-topics/topics/dvt
http://www.global-help.org/publications/books/help_pedsurgeryafrica112.pdf


#8

Hi i know this is an old post but I have a avm from my right buttocks to the tips of my toes and also includes the right side of my pelvis it encompasses 180 degrees of my leg from buttocks all the way to my toes sparing only my big toe from the avm. I’ve had a tkr and I just started schlerotherapy back in 2016 and yes the pain is very uncomfortable for me the pain most of the time is so unbearable I have yet to get a dvt but I always get the superficial blood clots and yes they hurt very badly you need to find a doctor that will help you out preferably a vascular interventional radiologist that is the doctor i am seeing at this point and he said I will be seeing him for the rest of my life when he retires I’ll get whoever replaces him. And I also would have to stay home from school alot I worked my but off my senior year because I was still a junior until the second half of the school year I took a+ And took 22 or so classes on the computer at school along with classes in the classroom so i could graduate I hope this helps you out some if you see this post and if you have any questions id be more than happy to try and help…


#9

Hi hun! I feel you! I am 22 I’ve had my AVM since I was little (about 8 but didn’t become obvious until I was 10 so undiagnosed for 12 years and painful for the last 13) but it had been undiagnosed due to a trauma in the same area disguising it, which has made it extremely resistant to treatment.(also lazy doctors) as far as pain goes it’s just something you learn to deal with. I hate to say that but it is. Ibuprofen helps with swelling for some people not me but for some otherwise elevating your leg helps some also. Sitting hurts just as much for me too, ask your teachers if you can take a walk around or stand for a couple minutes at a time, that might help. I have almost lost my job several times due to absenses from my leg. The worst part is its technically a “functional impairment” so if i did lose my job due to my inability to walk, sit, run, or manage the pain enough to come to work, i wouldnt even qualify for disablility through the state which would leave me with a poor job record an inablility to get a job and no way to earn an income. Try to sleep with your leg proper higher. Blood clots form in AVMs more often because the crappy blood flow through the dilated veins causes clarifications which narrow the giant blood vessels in ways that result in the clots. I have had 2 DVTs in as many years and they are painful and worrisome but usually manageable. (Very serious don’t get me wrong, but if you get them you can’t freak out cause it won’t help) I understand being frustrated. I have reached the end of my treatment options but my doctors are in denial and want to save my leg while I just want an amputation I don’t want doctors for the rest of my life. I have no attachment to my leg it’s just there. I am in the same boat as you and I hope I can help you get through it, even if it’s just a good rant every now and then. Feel free to message me.


#10

I’m sorry you’re having so much pain! I have an avm that takes up most of my left foot, and also limp because of it. The pain is unimaginable and caused me to miss a lot of school throughout my years as well. Something that worked well for me, was asking the teacher to either sit in the front of a row to put my foot up on a stool to elevate, (some is better than none!) or I’d ask if I could sit in different places in the room. Some teachers won’t always be as compliant, and for one I had to get a doctor’s note. My senior year I utilized crutches and it was really hard. I felt stupid and ridiculous. Like, why me? Luckily, I had amazing friends who would take turns carrying my backpack or books, and helping me out when I told them I didn’t need it. Bottom line is communicate your needs, whether you think they’re crazy or not. You know your body, and you’ve got to live with this, they don’t. It’s a lot of trial and error as far as what works and makes things comfortable, (maybe even taking like a pillow to school to sit on?!) It’s a terrible thing to deal with, and I’m so sorry you have to go through it, it’s never fair. But, if you need anyone to talk to, or ask questions, don’t hesitate to message me. I have had my AVM for about 12 years now, so we’re old friends. :slight_smile: It’s a long road ahead, but you’re definitely able to win over the AVM, just have to figure it out :slight_smile:


#13

Hi,
I have AVM in my right leg(knee, tight) from age of 15. I remembered I could sleep just keep moving around, eventually I learn to massage my leg, calm down until put myself to sleep.
21 years after it also grow in my pelvic, can’t sit, walk or sleep well, it’s effecting my job, and personal life. It sucks because you can’t explain to others, what you are going through?! It’s hard because they don’t see you disable. I remember people complained or called me rude when I put my leg on chair in restaurant because of the pain.
You just need to learn how to cope with pain avoid long standing or running, sitting even walking. I learnt stress make it worse, so I decided to accept my condition and be happy


#14

Teen years were awful. Who wants to be different? A nun voted against me for Honor Society, citing the reason that I never looked enthusiastic! I was in pain, dammit. Back then, you kept it to yourself. Nowadays, in the US, you can file a 504 form. The federal government will ensure that your specific accommodations are met! In school and the workplace. Please reach out to school nurse, Guidance Dept or HR. Standing was my nemesis. Poor valves in one leg veins caused swelling. I was seen as lazy. When I was being stoic and as efficient!


#15

Okay, I am 63 and a retired school nurse. I wrote the best, most comprehensive 504 plan for any student who qualified. I am proud of my work. When a 504 is violated, the federal gov,t sends out a caseworker to investigate. We were teammates! Imagine how intimidating (for administration) TO BE visited by a blind man with a cane, who travelled by public transportation. Due to my VM disability, I retired early. So my input here is what gives meaning to my painful life.


#16

I saved the most formidable topic for last: Pelvic pain and Sexuality. I am getting auto- generated comments that I should not post single, short posts. Should I make this a new topic in forum discussion?


#17

I have had avm in my right lower limb since i was 9 years old,I am now 23. I had a surgery which relieved the pain temporarily until the avm returned.
I do everything in moderation because of the pain.I can’t sit,stand,sleep or walk for too long.
Use a little bit of painkiller but not too much because of the side effects e.g. peptic ulcer
Compression stockings also works
My Avm is weird because i never get swollen feet and i have a smaller right limb due to disuse atrophy
P.s. Don’t try too much explaining to people because most people don’t understand and you might get frustrated
Just ignore people that are calling you lazy because you are a survivor


#18

My pain is absolutely unbearable today. Helps me make the decision to schedule another procedure with Dr. Rosen @Lenox Hill. I thought iron pills were helping, ut today I had to bite the bullet. Mad at myself, of course, for stalling. I should have at least scheduled MRI. I was weaning off pain meds, and perhaps this wk’s new level is just not cutting the pain.