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AVM Survivors Network

New to this site. Not to my AVM

Hi. I have an AVM in my left rear. It was misdiagnosed for 12 years and was huge by the time it was identified (2.5 x 4.5 x 6.5 inches). I even had a doctor tell me the pain was all in my head – I’d love to show it to him now. ha.

At any rate, I’ve had 45 surgeries and am schedules for 2 more this month. Of course, ethanol embolization leaves destruction in it’s wake. Has anyone found anything that helps with internal scar tissue build-up? My left side stays swollen 2-3 inches. Some of this is due to a restructuring of the muscle… some, I am sure, is scar tissue. Not sure what I can really do about it. Since I sit funny, my back and neck go out… so I see the chiropractor a lot.

Overall, I am doing okay. I am just tired… always tired. Thankful it is not worse than it is. Insurance is horrid though. $5000+ out of pocket each surgery. Goodbye dream of house solar system

Hello and welcome! It sounds like you have had quite the go of it, 45 surgeries, wow. Sure don;t like to hear about the costs associated to treatment, the AVM is always trying enough let alone trying to meet the financial impacts. I guess in that respect I;m fortunate to be in Canada. I’m not much help in respect to the scar tissue part, maybe someone on here can help. You’ll find a wide variety of experience here so someone may add some suggestions. Thanks for joining us and Take Care, John.

Hi Haye, Welcome and may you have a healthier 2019. Somehow you already seem happy so bless your heart.
When you said “scar tissue” it made me think of my brain surgeries. I’ve had grand mal seizures ever since (45 years) due to the scar tissue. At least that is what I was told. Please forgive me if this comment was not related to what you were getting at.
I’m mostly interested in emotional/memory/medication issues because my experience is ancient history and folks on here no worlds more about the technical stuff than I do.
I’m starting yoga for 2019 because my lower back has been sore for a long time. Plus meditation is good for stress/anxiety. It is only $20 for a two week unlimited intro offer (Phoenix.) I’m not making new year’s resolutions anymore. You can’t accomplish much in a year. I’m making 10 year resolutions. So I’ll be doing yoga for the next 10 years (gd willing.) The more we do, the more we can do. Have a great year, Greg

Thank you JD and Greg. Yes, Greg, I am happy, thank you. God has gotten me through a lot and I have confidence in His love for me despite the AVM.

I’ve tried deep tissue massage, acupuncture, stretching, and Avocado Oil for the scar tissue. None of it really seems to help. Of course, it is internal, so maybe my evaluation based upon size, swelling, and pain isn’t really a good determination as to whether any of those is really helping.

I try to smile through it all. I can twist the old adage and say “Does this butt make my pants look big?” :slight_smile:

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