Just had a pre-treatment appointment for my AVM in my heel. I’m a little disheartened because I cannot get a second embolization. They blocked off the main arteries, yet the swelling is still there and the pain is VERY MUCH still there. (Oh, and there’s also the possibility that I’m allergic to the metal alloy they used on my first treatment. Yay. But they can’t remove them due to the swelling etc.) The doctor I was referred to has suggested a few steroid creams to put on top because of the sensitivity of it and has suggested compression socks to change the blood flow. When I was younger I used to wrap my foot in different ace bandages and braces, yet nothing helped. I’m scared to start compression because I know it’s gonna hurt. Does anybody have any advice or experience in this?
I understand the pain. I have a VM in my ankle and I often wear compression. Started with ACE wraps and moved to compression hose/socks. They help with swelling because the blood can’t pool in the effected area. I have to weight the pain of the compression vs the pain of the VM. Usually the compression keeps the pain at bay but man does it make it worse when I remove it. Have they suggested ice? I find elevation helps, I put my leg up on the back of the couch for 20-30 min. I also sometimes sleep with it elevated on a foam wedge. It just promotes circulation.
Did they advise you one what level to use? 15-20 mmHg? You can always start a bit lower compression then they suggest and move up over time. There might be others who have better advice.
I’ve got AVM throughout my left arm, concentrated on the left side of my hand & pinky. I’ve been encouraged by my doctors, both at Sick Kids and Toronto General, to wear a compression sleeve since I was about 14 at 20mmHg
I wore it daily throughout high school & basically stopped once I got to college. I experience the similar back-and-forth battle as @Rachel2 between the compression pain and AVM pain as well as the pain of literally putting it on. I’ve found it best, when taking it off, to completely elevate my arm, so the blood doesn’t all come rushing back in (WHICH IS SO PAINFUL).
Fast forward to three years later, I mostly just wear my full-arm garment when I’m working out / elevating my heart rate in general & a smaller one just for my hand while I’m at work (TFW you’re a full-time designer, whose left-handed, with an AVM in said hand. Life has an odd sense of humour!)
Overall, I think the long-term benefits of compression outweigh its drawbacks. We live in pain anyways, may as well be a result of something which could save you further issues down the line? That being said, I just wear it when it works for me and is definitely not my primary way of day-to-day care.
One thing, especially since you’re experiencing swelling; which is oddly not mentioned a whole lot on here; is to use topical CBD cream or even take CBD oil orally. The steroid cream will deteriorate your skin over time, and it’s already struggling to get the nutrients it needs.
CBD stops the body from absorbing anandamide, one compound associated with regulating pain. Increased levels of anandamide in the bloodstream may reduce the amount of pain a person feels as well as limiting inflammation within our nervous system. (the potency can vary, if you live in America there’s a wonderful company called Charlotte’s Web who produce CBD specifically for health benefits).
Lastly, my only other bit of advice - eat anti-inflammatory foods; turmeric, leafy greens, berries and citrus fruits, beets, and foods high in Omega 3 oils (I’m vegan so I use avocado and nuts, but you can definitely take Fish Oil supplements if you eat omni). I know a few other women who go to the same VM Clinic as me who also eat a vegan diet to stabilize their AVMs; I think we often forget how much of an impact the foods we put in our bodies really have!
Best of luck <3 <3
I understand your hesitation, I have an AVM that takes up most of the bottom of my left foot, and cannot get anymore embolizations. The pain still plagues me, and the only thing that gets me through the day is 2,000+ mg of ibuprofen a day and kinesiotape along with CBD cream. If you are still hesitant about the compression, I would highly recommend the kinesiotape as It has helped me a ton with the swelling and sensitivity especially around my ankle and heel. I hope this helps!
It wd really help me if someone posted a ffoto or illustration of the kinesiotape. I have my vm o left female genital area and left buttock/ upper thigh. Once I bought the velcro self wrap for my thigh. Horrible decision, as all the fluid was pushed up into my belly! I have tried chaps amd bike shorts. Custom made, 15_ 20 mm Hg was way too tight. But I lost wt and they are not as tight as before! Why are they made so tight that it is unbearable to wear them? Thank you for any response.
Thanks for the advice! I love the list of anti-inflammatory foods! ROASTED beets are s stable in our house , when Autumn arrives. One ? @ THE fish oil, it makes me bleed more. Anyone else have that? I do not have a bleeding dis order.
Ooh, I love beets!! I’ve never thought of eating them for anti-inflammatory purposes, though. I’m not really familiar with the effects of Fish Oil but after a quick google search it looks like that’s a common side effect of too much fish oil. Check this out: https://www.ncbi.nlm.nih.gov/pubmed/28552094
Looks like it doesn’t really cause MORE bleeding, but rather makes it more difficult for your body to stop it. Makes sense that you would notice this more having AVM as we already bleed so quickly, the aggregation of platelets would probably be more of an issue than someone who doesn’t bleed so quickly. Hope that helps!
Hey Eileen long time no talk. I would say go see a physical therapist (my need orders from your dr.). They should be able to show you how Kinesiotape should work for your impacted area. I’ve had it done to my ankle because of how weak it is after all the repeated surgeries and lack of use but I’ve only ever had it done for stability not for swelling reduction. A PT should be able to show you the right way to place it and monitor if it isn’t helping. Its literally tape, all be it specialty tape, so it will rip out any hair it gets attached too… This might be a bigger issue in your areas then mine
Hope you are doing well! I’ve also heard tart cherry juice is great for anti-inflammatory. Worth a try if you’re investigating food options.
I am drinking the tart cherry juice as we speak! I always enjoy your helpful notes.I remember when you were the pregnant lady. Now you are an active mentor for others!
Thank you so much for your detailed answer? I know I am reading it 7 months later, but it is relevant to me now! Inflammation, from gravity, is my biggest foe! I am in NJ and consulted with a very legal medical marijuana doctor yesterday. The doctor reviewed my extensive history in my chart from pain clinic. And she def signed me up for my mm card. $100 out of pocket pmt. But she made comments as if I do not experience real pain. This upsets me. She stated that med mj will change the way my brain perceives pain. I do not want inebriation. Inflammation of pelvic pain causes PAIN. So what you wrote made me feel better. Anandamide is the scientifi c explanation. I have read it before, and you validated my choice to seek med mj. Thank You.
Well I’m glad to be of some help!!
That comment sounds very inappropriate and unprofessional, I’m sorry you had to experience that the stigma around using cannabis for medical reasons is unfortunately still prevalent; I find it helps to remember a bit of a mantra that this is YOUR body, and YOU are experiencing this pain. If you’ve found something that allows you to live a more free and enjoyable life, all the power to you
Thank you. I made it thru 63 yrs of life without pot, so I really should ignore the negative comments. Long ago, it was considered a " gateway" drug. It was also associated with lack of motivation, tho anyone can choose to use a drug excessively and not pursue other neurotransmitters.
I discovered that there is a 3 wk waiting list for a consultation at a dispensary. So, in the interim, I made appt. for embolization for next week. My life is too hindered by pain.
I have been wearing compression on my left arm now for the past month and I have found it has helped tremendously for the pain I was feeling. I have recently gotten some updated opinions on my diffuse AVM and VM in my left elbow and forearm. After seeing the ortho/oncology, vascular folks at Cedars and getting a second opinion from the Vascular Anomolies group at USC/Children’s I am taking a more conservative approach to treatment. I realize there is the extra aspect here of having to bear weight on an affect limb that I don’t have. I hope this helps. I am going to start physical therapy next week. I also have been taking CBD for anxiety and I find it helps with the pain in the arm.
This is a really good discussion even if the thread is a bit dated. I’ve used compression sleeves on/off since I was around 10 years old. At that point the doctors at the Children’s Hospital said “if you don’t wear this your hand/arm could get the size of a pineapple” - That was kind of traumatizing to me. Compression sleeves have come a long ways since those days! Mine are made just for me using measurements from my surgeon. They are made and shipped from Germany and even have my name on the little tag - But they are NOT cheap! Each set (hand/arm) costs around $300! I could not work full time w/o my compression sleeves. Yes, sometimes the swelling is so bad I cannot wear them, but mostly I can.
Much love to you all!