Frustrated

An average day for me starts with tingling pain. Drats, I forgot not too sleep on my right side and I leaned on the avm again. Wiggle the toes, a quick massage, stand up, faint immediately. I shower and my feet are a mesh of purple and red, veins rise to the surface of the legs and I have to remind myself that this is not normal. I am not normal and I never will be. The shower is usually cut short by my need to sit down. Arms are heavy, hard to move my legs, head pounding from the lack of blood flow. Compression stockings have been mastered to only taking 10 minutes to put on. My current ones are from JCB, called ulcer care and there are four components. These ones are relatively easy to put on but in a hurry, they are painful. When they are on wrong, the pressure builds up and it feels worse than not having them on. Yesterday I tried to go on a run and the pounding of the avm drew my body into an aching rhythm of increasing unconsciousness. I felt so sh*t that I had to sit down, raise my legs on a bench and wait for the blood flow to return. I want to be fit but my body makes it so hard. If I don’t gain fitness, improve my circulation then will it be too late? How long do I have before my veins give up on me?
I’m 18. My symptoms started when I was 6, indescribable pain and swelling haunted my right foot. A few years later I was diagnosed with varicose veins and they were removed alongside a lession. After surgery, the only thing that changed was that now I had a big numb patch of my foot. By the age of 12, i was finally taken seriously and I was diagnosed with AVM. Two sets of foam sclerotherapy were performed, then another a few years later. My nearest hospital that performs this procedure is 4 hours of driving away. Last appointment I was told that I wasn’t bad enough to have the procedure and prescribed stockings. And more stockings. And more stockings. They tried all sorts of shapes and sizes of them and I was their little guinea pig.
When AVM was first introduced to me, I was a kid. I don’t really remember how old I was but I do remember that the doctor talked down to me. He told me the bare minimum and supposedly that man is one of the best in the country? I’ve asked before and I will ask again too many doctors what on earth this condition means and the general consensus is that I should already know. Hell. I’ve been living with it long enough.
I still don’t understand this condition fully. I don’t know if it can spread. I don’t know the complications.
This website name terrifies me because it reminds me that I have nothing to complain about. I’m not a survivor of avm because it’s never truly affected my health. Yet?
Looking online there’s such little research.
I’m angry that I’m angry about this. I shouldn’t be angry about my condition, I should be grateful that it didn’t grow in the brain.
Does it spread?
What does my future hold?
Does it get better? Is this my best?
Will it get worse? Will it get drastically worse?
I’m so angry but it’s not bad enough to rant to those close to me. Not bad enough to go to the doctors.
I’m fed up with having chronic illness. I have chronic fatigue too, endometriosis, depression, anxiety, undiagnosed psychiatric conditions and I’m fed up. Managing symptoms? I say bullocks to that. Sometimes I just want to stop everything that’s good for my health and watch it all crumble and burn and watch my body struggle for a way out, any way out, I can give it a way out.
But I don’t.
Still here, aren’t I? Am I?

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Hi Anna, we hear you and feel you on this site. We know that feeling of loneliness and how it feels when even doctors don’t seem to understand our condition. You are not alone. Me and others who have similar variations of this condition are here for you to vent to. Our AVMs are all different but have similar traits. There will be someone with a foot or leg AVM who may be able to offer more support than I can, however I do know a few things that may offer some reassurance.
I do not know the specifics of your condition but recent genetic testing I had has 100% confirmed what I was always told which is that my AVM is non-heredity. Whilst I will never completely understand it, every expert has always confirmed that my AVM whilst throughout my whole arm and shoulder, will not spread to another part of my body. I can’t profess to understand why but in my 40+ years it hasn’t.
I have managed to have a really fulfilled life (including children) and a career but I still have low days. The pain is awful. I know it’s hard when you get little support from doctors but it is really important that you keep pursuing them. Maybe one of us can make a suggestion for ones in your region/country to try. It has taken me years but I finally have vascular experts along with a pain specialist. There is more treatment now than ever before and new drug trials on the horizon. This is all really good news for our community but hard when we cannot feel the impact yet. It is important for you not to give up. There is medication which can help with coping with pain and so it is important that you are honest with doctors about how you are feeling.
We are all surviving, we are all just trying to get through each day, but I do feel grateful (that is hard on my worst days) as I know it could be worse. Hopefully you can continue to open up on here as there are wonderful contributors who I know will offer support, and whilst family and friends struggle to understand everything we go through, speaking to them is important. In my experience they are good at picking up something is wrong even if they do not know what it is exactly. Thank you for sharing your frustrations.

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Thank you for your well thought out reply. I don’t know what else to say but thank you for providing hope

Hi Anna, it’s great your comfortable telling us your story, or as many have said, the AVM journey. These things are confusing for sure. I met two fantastic neurosurgeons when I had a bleed, they made my recovery smooth. For my general health I see a nurse practitioner, who is off the charts good for all the general stuff, and does the referral’s for any specialist type things, which I haven’t needed lately. I think finding someone you’re comfortable with is really important, although that is sometimes difficult!

We are here, and while all different, we share a lot of the same challenges. I find the similarities most evident from the psychological standpoint no matter where our AVMs are located. Having a group that shares challenges has let me understand how I feel, and has made me much stronger. It certainly took some time to gain strength, and while there will always be setbacks, the secret is to make the next steps greater than the setback. Forward is not a straight line but forward is forward!
I hope that makes sense!Take Care, John.

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Hi Anna

Yes frustrating. It sometime amazes me that we know more about the universe than we do about the human body. :slight_smile: But don’t despair.

So, I have a pelvic AVM. It’s about the size of a cantaloupe in my pelvic region. It directly connected my left major artery to my left major vein. Short story, it tore. I did not know what was happening and neither did the doctors. It wasn’t till the second CTscan that they had me meet with an IR doctor. He told me that I had an AVM and a general description. My main question was how bad? Essentially he wanted to start the surgeries within 6 month. This led to a very confusing journey. I was ultimately prepped for my first surgery twice and on the third time, I was allowed to proceed. (Different complications with my heart.) I’m done for now, I had 4 surgeries and 20+ meters of coil to embolize my AVM. I had never been in the hospital before this, thus I would like to suggest two take aways from my experience.

  1. If your medical plan or situation allows you to get a second opinion, get one. I was lucky and the doctor I had decided to go off to a conference that had an AVM track. He also talked with several doctors who also had AVM patients.
  2. I whole heartedly endorse what John said, get an Internist or have a nurse assigned to your case. This person will be able to talk to the doctors on the doctors terms and translate for you. They will be able to communicate your concerns to the doctors more effectively. This is something I wish I had. I had to navigate 3 specialist, 4 procedures, 1 year of hospital visits and trying to learn what an AVM is without help. I did not find this site until after all my procedures.

So I just reread your last part of your message. Here I am going to try and suggest a fix, heck that’s my day job. :slight_smile: But I would really suggest you talk to your doctor and get the point 2. An Internist or Practitioner assigned to you. Then tell them about all the other issues. Heck depression and things can be brought on by a constant physical situation. I’ve probably got a few of them also but too proud to get checked since a guy doesn’t suffer from that stuff. :slight_smile: Anyway, my AVM kept me from ever having washboard abs, no matter how hard I tried. People always called me fat, even when I was running a marathon. And my AVM caused my heart problems after it tore but the heart specialist will not look at my AVM stuff, since what do I know. :slight_smile: Once my AVM was taken care of, I feel better. I’ll never have the washboard abs because the AVM is now fortified with metal coil, but I do have something that triggers airport security. :slight_smile: But the important thing is now I know why. I never knew it. Now I can address it.

Keep Goofy. As my daughter says.

And I’ll leave with this “Back to the Future” quote:
“It means your future hasn’t been written yet. No one’s has! Your future is whatever you make it. So make it a good one!”

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