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AVM Survivors Network

My AVM story


#1

At 9 year old,i started feeling this aching pain at the posterior thigh and calf of my right lower limb which was gradual in onset,continous and worse on waking up,prolonged sitting,standing or walking.Few years later i started walking with a limb plus i had a thinner limb due to disuse atrophy.
I wasn’t diagnosed correctly until after 8/9 years.I was diagnosed with various disease ranging from arthritis,dystrophy,poliomyelitis,congenital short femur e.t.c.
I lost all hope at some point because for proper treatment,a valid diagnosis must be made. Had various tests e.g xrays(i had to refuse further xrays at some point,CT scan,MRI,Angiography,blood tests e.t.c
A diagnosis was finally made in year 2012.


#2

i was in a depressed mood for a while because i had two surgeries which failed due to recurrence and i am scared about the next surgery.
A lot of questions keep trooping into my head e.g. why me?, what if this fails again ?,what if i have to deal with this all my life?,what if i pass it on to my children? e.t.c
Yes,I am still scared but i keep remembering that all my hope is in Christ alone,i have nothing to worry about.
God has got my extremities.I need not worry about the past,present or future.
I am an AVM survivor.
My pain and scars will not distort my success story.
I am a hero.
I have got strenght,hope,courage for a cure.
I am a fighter.


#3

I have had 1 surgery (very unsuccessful only 6 months of pain relief) and 5 vein embolizations with alcohol(Age 10-32). I was lucky that my mother was persistent in finding a right diagnosis and that I had an MRI technician when I was small that took LOTS of images. Mine is also in my right leg. My foot doesn’t swell but my leg does, though I’m not sure an outside person could tell. The swelling is what causes me pain. Thus I do compression, ice, elevate my leg, and anti-inflammatory medication. Mine is quite deep in my muscle and you can’t see with the eye.
I understand the pain. I have kids and I also worry even though I don’t have evidence of the genetic type (HHT). I also have dealt with depression when the pain is very bad, when I have to keep getting surgery, when I can’t do things “normal people” do. I also have one in my liver which isn’t been treated and I wonder if it should be but I don’t really want more surgeries…
I pray your next surgery will go well and at least for a time you will be in less pain. Welcome to our community where we cannot solve things but we can understand what you feel!


#4

Thanks a lot
I hope the Avm in the liver isn’t causing you pain?
My Avm runs from the right vulva to my toe.I am scared that it might also affect my pelvic organs.
Understanding has a major role in solving
It is so hard explaining and making even friends understand that i just woke up from a long night sleep but i cannot go for lectures because my limb is weak and i am in pains.
My major concerns are the pain,the limp,scars and the discolouration of the leg.


#5

I’ve been where you are right now. I was diagnosed with Peripheral AVM a little over 3 years ago after I’d been misdiagnosed at least half my life despite seeing several different doctors regarding numbness in my foot, discoloration, and weird puffiness and visible veins that shouldn’t be there.

I went through so many tests before they finally diagnosed the real problem, and then after that I saw 10 more doctors just trying to learn as much as I could so I could figure out how to deal with it.

I was in so much pain I couldn’t sleep and I could barely walk, but I was alone and forced myself to save face… I went to school every day and worked all night because doing things kept my mind off how much pain I was in and how scared I was about what was going on.

I had a really aggressive AVM in my ankle that effected every artery in my right leg and my foot was just dying. By the time it was finally diagnosed and how bad my heart was getting due to the pressure pumping back up to it, I didn’t have a lot of options. What happened to me is what I’ve seen most people try to avoid because it is drastic and it is a last stitch option… I lost my leg. My right leg was amputated from mid-calf down.
Now I don’t regret making that choice and I’ve had a wonderful life since then. It hasn’t been easy, but I got my life back which is something I never thought I would have. I am pain free, but most importantly I am AVM free.

However, that is not going to happen to everyone who has AVM in the extremeties. There are other treatment options before it gets to that point (I just happened to be diagnosed so late and with such an aggressive AVM that I really didn’t have those options), but the advice I can give you is to see as many doctors as can… get as many second opinions as you can. Not a lot is known about AVMs or treatments for them (though it’s getting better), and you’ll find that doctors will have differing opinions of what to do. It may be frustrating, but you get a better picture of what is actually going on with your body and the bigger picture you have the better place you are in to make the decision that is right for you.

I understand the fear, and knowing more doesn’t necessarily get rid of that fear, but it does put you in a better place to understand how to deal with it. So I would highly suggest just being open and curios with your doctor, and if you’re not getting the answers you are seeking then trying talking to another doctor.


#6

Thanks a lot
It is really uplifting to have people who truly understand my struggle
I think i will change doctors