Hey y’all! I have a large AVM in my right leg spanning the top of my thigh to my calf. It is always swollen, significant pain daily, and have had a DVT. I have not received any treatments for my AVM since surgery at age 8. I am now 30 and desperate for help and also desperate for mobility. I am currently over 300lbs and preparing for weight loss surgery. Has anyone here had bariatric weight loss surgery while living with their AVM?
You are one brave AVM-er! From what I’ve heard, the Bariatric surgery is no joke. The fact that you have a large AVM in your leg is almost too much to comprehend. My AVM is in my Cerebellum and mainly affects my walking, balance and coordination. Also I have some short term memory loss, and vertigo on a daily basis. I’m not complaining because I know it could be so much worse. I read your post and I just had to reach out to you. I wish you the very best. P&P (Prayer & Patience) has seen me through since 2014 and it will see you through as well.
Hi Tashie nice to meet you!
I also have a leg VM in my calf only. If your surgery was when you were 8 its likely its grown back again. Surgery isn’t the best option for most with AVM. Embolization is more likely to be helpful. I would suggest finding an Interventional Radiologist who has treated AVM. You can find them on on https://www.sirweb.org/ Depending on the kind of Bariatric surgery you can be on blood thinners and other medicines that might make an active AVM dangerous. Plus you’ll be in bed for a while which make DVT more likely. I haven’t done Bariatric myself but I understand wanting to be more active. If find water aerobics, especially deep water, doesn’t bother me too much. Its usually full of old ladies but oh well. Or if you can tolerate it a lap pool might also help.
I had in my right leg since 11. I had surgeries, 5 embolization but didn’t help. I am 32 now and in pain. Last month done in my pelvis and now cant sit, walk even lay on the bed for long. Its hard because some people don’t get it.
I lost my weight by eating less and lots of walking. I found it much helpful to keep myself busy this way.
Hope all goes well for you.
I don’t have any advice for bariatric weight loss I just wanted to show my support for your journey. I have put on quite a few pounds (over 30) in the last 2 years because my AVM (in my left calf) has become much more painful and I find it hard/depressing to exercise when it makes my life hell later in the day and for days at a time. Also I have some muscular instability now since I started schlero therapy so my knee on that side gives out randomly and I either end up kneeling or on my face. The struggle is real. Best of luck to you!
Thank you Sharon! I appreciate you reaching out. It is such a journey for us. I feel like I need more options. But you are right, maybe I just need more prayer and more patience. I will try my best Sending you peace and love!
Yes, this is true Rachel. They grew back and multipled. I have been going to doctors, but they all turn me away. I’m really depressed. I don’t know how to get them to help me. Especially because of my type of insurance. And because it’s been so long since my surgery, I get the feeling that these doctors are looking at my leg thinking it’s no big deal. But I’m in pain. Paralyzing pain. And I’m a mother to a toddler. I want to be active in his life, so that’s why I just want to have weight loss surgery. I’ve tried other weight loss and I am not successful.
Mahnaz, my heart goes out to you with your pelvic AVM. I can’t imagine the extent of your pain with it moving there also. But yes, the pain is paralyzing. I also have back pain (degenerative disc disease) and it’s hard for me to even move at all. This is why I want weight loss surgery.
Yes Julie. It is a struggle indeed. What your explained is exactly how I feel. My muscles in my leg and my lumbar spine are suffering from this all. I’m in constant pain. It really is depressing. I will continue to pray like Sharon said. But it’s comforting to know that someone else gets it… To know I’m not the only one, and to keep hope alive.
I once asked for lipo b/c the extra wt put such a strain on my VM in thigh. Politely, MDs agreed with my theory but no insurance wd ever cover lipo. However, if my BP or blood sugar was affected by wt then insurance wd cover it FYI, degenerative disc disease is being treated by procedures of the outer spine- the dura mater. Find yourself a pain clinic rather than bariatric surgery first. A big part of bariatric recovery is movement, to prevent clots. Has a bariatric surgeon actually accepted you?
Aren,t the embo recoveries horrible? All I can say is the more pain, the more gain. And it is always great if you do not get skin breakdown or ulceration post-embo. One embo took 3 months of recovery, b/c a huge superficial blood clot formed and left scar tissue where the venous malformation had been. I was so excited when I recovered. We thought the nidus had been destroyed- the spot where the VM went awry during fetal formation. Haha, was I naive! there are multiple niduses.