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AVM Survivors Network

AVM and amputation


#1

Hey guys. Im new here but not new to the AVM. I’ve had my CAN in my left lower leg for 13 years have been seeking treatment for 12 years and have only received it in the last year. I have had countless rounds of sclerotherapy done (Has done nothing) I’ve had 2 DVTs and many superficial blood clots in my AVM and I’ve been told that coiling and resection are not an option for me. I have a very complicated AVM and either one could potentially damage too much healthy tissue. Essentially I’ve been told wear compression stockings until I have some kind of complication like high out put heart failure ulceration (I am having a lot of heart palpitations and shortness of breath but I am also 8 weeks pregnant so that can go either way) and THEN they will do more than band aid solutions. My question to you guys is…What are your thoughts on amputation? I honestly think its my best option. I have 3 going on 4 kids to take care of and I would prefer NOT to have heart failure or a nasty ulcer or infections or MORE blood clots. I am only 22 What will this be like when I’m 45 if right now I have a limp, i can’t run, I’m afraid of my kids touching my leg for the pain, and I’ve already gotten blood clots? I could adjust to a prosthetic at 22 a hell of a lot easier that 45. Let me know your thoughts guys. Also anyone who has had the amputation can you tell me your experience?


#2

@JulieLowe Have you got a second opinion? Sent your scans to Barrow? My sister got the flesh eating virus and had to have most of the top of the tissue removed from her foot and some of her leg tissue - It was pretty intense - I am so sorry you are going through this. Hopefully some others can shed some light my AVM is in my head and controlled at the moment
Angela


#3

Julie,

Welcome to the site! I’m sorry you are having such a tough choice. I think @Tan, who is also a new member, is in limbo wanting another baby but has a foot AVM. I hope you guys have some help you can give to each other. I also hope other members of the Extremity group will chip in.

Very best wishes

Richard


#4

Hi julie i just wana say i would get a 2nd opinion i would not want 2 amputate my leg especilay if u got 3 kids and ur 4th on way. I wish i could get some proper treatment aswell as i dont like the way my foot is looking atm its bigger then the other 1 and different colour. Is it not guna make ur avm worse if ur pregnant again


#5

Yes I’ve seen way too many doctors and they all pretty much say the same
thing. It gets old really fast.


#6

See the thing is there absolutely no doubt in my mind that I would be just
fine without a leg. I grew up on a farm and I just do what I gotta do.
Theres 5 feet of snow on the ground? Doesnt matter horses gotta eat. The
pitch fork brike? Oh well use your hands. I HATE that i CANT do things.
What I can’t do is have something that “works” but doesn’t function. I’ve
never loathed anything more than I do my leg. And to hate a part of
yourself is just exhausting. I think at some point (maybe not for years but
at some point for me anyway) putting on a prosthetic would be like putting
on my shoes. It’s just another part of your life. But this leg doesn’t LET
me have a life. If I’m out having fun and letting lose I’m reminded of the
part of me that will never function through the pain. I think its just the
fact that I will always have to COME BACK that brings me down. I WANT TO
RUN AGAIN! I used to be so athletic. Running was how I delt with stress how
I hung out with my friends how I started my day. Now I start my day with
wrestling my leg into a compression stocking and proping it up whenever
possible or i will regret it later. Or placing a pillow between my calves
at night so it doesn’t get too much pressure. I’ve had this thing for 13
years have had lessened function for 6 years and with each child (I have 3
going on 4 and I was unaware until recently that made it worse) it doubled
and got more painful than it already was. I domt want to sit around and
WAIT for complications. I can’t imagine my family mourning me because of a
sudden pulmonary embolism from a DVT that I was unaware of or sudden High
output heart failure from this thing just sucking all my blood supply away.
I want to prevent even the possibility of those things happening by getting
rid of the problems all together. I want to see my boys graduate and my
baby girl walk down the isle. I NEVER want my husband to have to do this
alone. That’s my reasoning and I feel very strongly about it. I know it
seems crazy that I have no feelings of attachment to my leg aside from the
fact that it’s attached to me. I guess that’s just the way I was raised.
Keep on moving cause life won’t wait for you.


#8

Julie,

I love your drive! I really do. If there is anyone about to make the best of life, I think it’s you. I completely get your views about your AVM and they are stark, uncompromising views. And maybe that strength is what you need.

To lose a foot is a big thing and difficult for most of us to comment on or help with. I also know that this site is intended to be accessible to teenagers without causing offence or leading people into any kind of danger, so this curtails what we might say, too. And I know one teenager on this site in potentially a similar problem to you.

So I hope the Extremity guys might offer you some thought.

Otherwise my thoughts are: if you really think you’d be better off without it, definitely discuss with your doc further; find out about managing an amputation… I’m sure it isn’t always so straightforward, so be sure you’re making a knowing choice, not assuming the grass is greener on the other side. I don’t know that adapting to a prosthetic is better at any age, so ask about that, too.

I think we’ve got just one or two amputees here. You might do well to look to a more general amputee support group for this question.

I hope this helps. I think you’ve got one of the toughest choices.

Very best wishes,

Richard


#9

My leg swells and aches more but nothing too bad. I do get blood clots in
my AVM during pregnancies though. My pregnancies are pretty normal except
I’ve been induced with all of them at 39 weeks. The first I had pre
eclampsia the second I had a hip pop out of place and it was just too
painful and the third I got a blood clot 3 days from my due date. I can
understand you not wanting to lose your foot. There isnt much in the way of
advanced prosthetics for just a foot. My AVM is located just under my knee
on the inner left side of my calf so it is really in the perfect place for
an amputation. I can’t stand wearing the compression stockings either. Most
of the time they don’t really help. They do help in the summer when it’s
really hot and your body just doesn’t want to let the water go but other
than that as far as a daily basis thing they don’t really help. I’ll put
them on in the morning but after a couple of hours I have to take them off
cause they make my thigh hurt. Idk.


#10

Aww well i hope your pregnancy goes well this time round and u and baby are both fine i fink u are really brave and strong and i think u shud go with watever u think is best for u. My avm is below my left foot just below my big toe the ball point but i do feel that the compression stocking helps me more in winter but it is hard to wear all day everyday. From what i have been reading on i ternet alot of people with avm have had treatments but its never totaly gone so i dont know. Also what does your leg look like it must be really bad if u cant really do much with it and if the kids touch it it hurts have you got varicose veins


#12

I still havent got hang of this site so still learning sorry lol also wanted to ask how did u know u had blood clots through pregnancy


#13

Would u say that our avm is the same just in different places i mean i get leg pains too now after angio but i dont know if thats got to do with my avm or somthing else idk just realy miserable atm.


#14

2 posts were split to a new topic: Tidy Up


#15

As far as blood clots go I’m pretty used to watching for them. I get the usual hot spots that are red and hurt like crazy. But I have ultrasounds done every time I get those (even superficial ones can be dangerous as my superficial veins are more closely tied to my arteries than in normal people.) I prefer to stay on the safe side.


#16

Hi Julie I’m 26 yrs old and i have a avm of my entire right leg from my buttocks to the tips of my toes including the right side of my pelvis sparing only my big toe it encompasses 180 degrees of my leg from veins under the skin to my soft tissue muscle and bone I hate wearing the compression stockings to every since I was about 6 or 7 and they hurt me so bad that if my mom put it on me if take it right back off when I got to my room I no longer have owned one since then and I also have had a tkr because I got osteoarthritis from my avm back in 2010 as a matter of fact I’m going back next month to my orthopedic surgeon for right sided knee pain there’s alot of times i wake up at night can’t move my leg at all or walk it makes me cry from so much pain i have not yet had a dvt but I get superficial ones I have to watch and they hurt bad I have one right now on the bottom of my foot I honestly would get more opinions because I was told back when i was 16 I needed an amputation that was my only option and I looked them straight in the eye and said no I have 2 kids 3 and 4 yrs old I started schlerotherapy and embolization therapy back in 2016 with a ir and he said ill,have to see him for the rest of my life and his gonna have to call in a specialist for my bones in my leg because he does not work with bones if you have any questions feel free to ask and I’ll see if I can’t help…


#17

Thank you for commenting. Your struggle sounds hard! I feel you on all the doctors appointments though. I don’t want to see doctors for the rest of my life (that’s my only option now as I’m not a candidate for embolization or wide excursion. That or amputation) in tired of sitting on the sidelines of my life. I just watch my kids play instead of playing with them for fear of pain. Your AVM is much wider spread than mine, i guess I got lucky in that aspect. I have yet to find a doctor who doesn’t galk at me when I suggest it but again I feel no attachment to my leg. It’s just a thing. I don’t need it. I hope you can continue to be treated successfully. Osteoarthritis would be awful. (Another complication I’d like to avoid.) Let me know how the appointment goes! I hope it’s something small but we all kinda know how these AVMs work, if it can go bad, it will. Good luck!


#18

Yes man I will let you know how my doctors appointment goes I have it on the 20th and yes if it can go from bad to worse with a avm it will the avm Is like oh well it’s already bad let me just make it worse lol and I am not even a candidate for an amputation because of how extensive mine is with pretty much every single muscle tissue and bone effected I honestly don’t even think embolization/schlerotherapy is gonna work on mine I’ve had so far 4 of them on my calf and above my knee and I honestly think my calf hurts worse now then it did and I think that’s also why I am having my knee pain because my doctor did the procedure right above where it is hurting now so honestly I don’t know what to do besides have faith I live in Texas and only in 2015 I found the ir and not one doctor has told me much about my leg I have to look at my radiology reports myself and that’s the only way I found out how extensive it actually is I didn’t know it went in my pelvis till I read it and I didn’t think I had the avm that could potentially give me congestive heart failure till I read the reports honestly I really don’t think doctors really know what there working with unless the avm Is in your brain like right now there doing a clinical trial of some cancer medications on a young women from the UK because they have found that some of the chromosomes in the avm actually can cause cancer or something like that so prob in the next 2 yrs avm sufferes will be thrown cancer medications to help treat it but as of right now I’m just living day to day with my babies I take Norco and valium for my leg and I have been on those since 2009 after my knee scope before then I didn’t even want anything besides Advil I took up to 12 a day and motrine since I was a baby but they help be be able to run a little and have fun with my babies and I think I’m just rambling lol sorry if I was…


#19

I saw some sign of this in a BBC News article the other day. Where did you read or find out about it?

Richard


Will cancer treatment have an effect on my avm?
#20

I saw it when it first came out on BBC my ex husband is from England and I receive news articles still from BBC and now if you search it it’s in more article’s now and one says that the drug will be performed in a international trial starting next year right now there only doing it at a children’s hospital in the uk.


#21

Ok. Thanks. I’ve found another reference here: https://www.ncbi.nlm.nih.gov/pubmed/29461977

If I’m in danger of diverting this conversation, say so and I’ll move it out elsewhere. :heart:


#22

Its all good! I don’t mind going a little off topic lol.