Hi everyone, I have an AVM in my right hand between my thumb and pointer finger. This area swells like crazy and causes tremendous pain. I also feel the pain in my knuckles and fingers and feel as though it is growing in size. I have been diagnosed for just over a year and am going in a couple weeks for my second sclerotherapy treatment (only been about a year since the first). I am an LPN and work in dialysis, I love kayaking and yard work in the summer and right now the pain in so bad I basically just go to work and do not do any of the things I enjoy as I can hardly make it through the work day. I am in tears almost every day. I am not ready to stop working but the pain at times is unbearable. It is very depressing, not even 30 and it feels as though I’m loosing function of my hand, then there’s the thought of what if there is another one I am unaware of. Is there anyone else who has a similar experience? Any tips on dealing and or coping with the pain and fact that I just cant do what I used to do? I look forward to hearing from you guys!
Hello Amandas, and welcome to the family here. It sounds like your AVM is becoming very troublesome and might need more than sclerotherapy to cure it. Has your doctor said anything to that effect to you yet? As a nurse you are more aware than most what it is, what it can do, and how it can be treated. I think it’s pressing on nerves when it swells (we know the hand is just chock full of nerve endings). Is it possible this is a different AVM that developed after the first was taken care of?
I hope your second treatment takes care of it for good and will be praying for you.
Please keep in touch and let us know how it goes for you.
Hi Amanda, yes I’m in a very simular situation and have the same struggles, I’m sorry I don’t have any answers for you but wanted to reply and let you know that your not alone, be strong and try to stay positive, take care,
Amanda,
Try to research (CPSP) syndrome or Central Post Stroke Pain Syndrome. This affects approx 8% of Stroke Survivors.
I also get pain in my hand/arm and my leg on my right side since suffering my stroke although my pain comes and goes a few times a week and can last any where between 5 minutes to over a hour.
I hope this helps.
Hi Amanda, I have an extensive AVM in my left arm so I know exactly what you mean about the pain. It is unbearable but some how you have to try and keep going. I find exercise does help. The pain sometimes is so bad I don’t feel like it but once I do the exercise it feels a bit better. I run which doesn’t need the arm. I wish I could offer something about treatment but I am on a journey myself to try and get some at the moment. I am waiting for a new referral. Mine was identified at birth and has got worse over years, but I work full time and have four amazing children in my life, it hasn’t held me back. My husband is so supportive and I have a range of medicines and techniques I use for the pain. Take care of yourself and if you ever want to chat about our arm AVMs let me know. Mx
Hi @loripetnut thanks for your response, I really have only seen my doctor once since the last surgery and that was a few weeks after as a follow up and that time things were pretty good. I have not been able to see him again and slerotherpy is scheduled for the 24th and when I asked about an apt. for newer accurate imaging they declined. I’ve had a pretty good experience with this guy so far. As far as this being a new one I am no expert but I do not think it is new as it is the exact same spot as before just worse and larger I feel it has grown. At the follow up I had he did an ultrasound and only part of the avm was occluded so the first sclerotherapy really did not do too much. Thanks again I appreciate your thoughts!
@electrician it has been so much nicer knowing I am not alone, it sucks that there is really such a larger population of us than I thought they were but it is nice we can connect and share experiences. I hope you too can find some relief!
Hi @Maryg, I am glad exercise helps some for you, I have been an avid gym goer for the last few years and now to lift any weights or even running (which I love) hurts so bad, I still run as it helps lift my spirits but I have to hold my arm up because swinging it and or letting stay to my side creates a lot of pressure and pain. I recently tried hiking at a local place not very intense and even then there was so much pressure and I was not using my hand or arm at all just minor swaying as I was being cautious. I have not been given anything for pain other than voltaren gel which did not do a thing. The work I do is specifically hard on my hand because of the location and the small tedious things I do plus the big heavy stuff. I really have only seen my doctor once since the sclerotherpy and it was a few weeks after to check the status and we found out that only a small portion of it was affected. I would love to chat with you about this more, most people I see do not understand any of what am I going through and it is very frustrating. At work I feel I have to convince people of the pain so that I can get any type of help a lot I don’t want help but I physically cannot do things sometimes. Do you have an email or is there a way on here to message each other personally or is it just a chat like this? I am still new to this site.
Thank you so much I cant wait to hear from you again
Hey @Amandas !
I have something similar - I have several AVMs in my left arm, mostly in my pinky area.
The risks of sclerotherapy in such a small and delicate area are a bit higher than if it were within your arm, leg, etc. (not a finger!). So, be aware of the risk of nerve damage.
I had 1 round of sclerotherapy in 2014, and it’s my biggest regret in terms of care for my AVM. I had been experiencing a bit of dry skin in the worst area, and more pain than usual (nothing compared to what you’ve described, mind you) before having treatment.
Post-treatment, the area where most injections happened have poor circulation to my skin, causing my skin to die and continuously flake off and stay very this permanently. The dry skin is more painful than the pain before treatment. I also lost a lot of mobility in my pinky. Though it was quite large before surgery, I didn’t have any mobility problems --I’m left-handed, and I draw, played the piano, etc. I now cannot bend my pinky at the knuckle fully anymore and have developed a cord of scar-tissue which prevents me from fully extending the pinky. Overall, it’s awful.
I say all of this not to scare you out of it or anything, but to be aware of all risks. I didn’t know these were possible outcomes, and I felt like my doctors ill-prepared me for the pain of healing, and what could go wrong.
Now, I know everyone hates them, but do you use a compression band? What with my AVM being in my dominant arm, I’d always hated mine, but recently got one that doesn’t have individual fingers, except for the thumb. It compresses with uncomfortable areas without cutting off circulation to my fingers.
Aside from that, I use a topical CBD cream and an oral CBD tincture to manage pain. Putting on the CBD cream right before I put on my compression glove = pure bliss!
For some context as well; I’m 25, have been regularly dealing with this since I was 5. A lot of this struggle is dealing with it mentally. It can be frustrating, but this site is great, share your battle with your friends and family for support. Self-care is so important <3
Amanda’s, thank you for reply, Yes I agree and I also was shocked to discover how many of us there are in the shadows, to say it sucks is the understatement of the year, I find it really sad there is no one advocating or making the public aware of are plight, I’m referring to the famous people that are in the same position as we are and have the ability and cash flow to do so, if I every hit the lotto I would become an AVM advocate and make awareness priority two, first would be to help out other avmer’s like your self, meanwhile, like you, I am just very thankful to have this site, knowing your not alone and having someone that understands is priceless, be strong and never give up !! take care,
Hi @hringioggrafir I am so sorry to hear how sclerotherapy was actually harmful and not helpful for you, though its proved to not last long it did relieve some pain for some amount of time. I did try a compression, I used an ace bandage when I first started having trouble and it helped some but now the skin on my hand over the area hurts to even touch lightly let alone leave a wrap on. After I read this message lastnight I tried again and put one on and my wrist felt ok but then my fingers had so much pressure in them I took it off. How are you coping with stress and lack of mobility? I am becoming more depressed it seems? Im glad you have a way to make you feel better though I plan on calling today to discuss options for after surgery when I am back in this position. Thanks for your concern this page is amazing!
@electrician I think its great you want to advocate for people! As a healthcare professional I can say there is definitely not enough people advocating for themselves or for other people.
I totally get the skin sensitivity issue! I also don’t leave my compression band on for long periods of time; generally just when I work out and if I’m experiencing a lot of pain.
Depression is such a common problem within this community and it doesn’t seem to be a topic on-the-table a lot at doctors appointments. I think part of “healing” is accepting the AVM as part of you, if that makes sense. I’ve noticed the language my doctors use is very problematic, and probably contributed to my less-than-great mental health in my younger years–by problematic I mean referring to your AVM as something external to yourself (“the AVM”, etc.), when in fact your arm with the AVM is still your body, and is no less than any other part of your body. The media does a really good job at convincing everyone that most people have “normal” bodies, which is completely untrue.
An example of something I’m dealing with right now would be my art. Since surgery and the loss of mobility I described before, I completely stopped drawing for like three years. I’m just now beginning to start again, as it was a combination of not just pain but lack of confidence preventing me from getting back at it. I’m definitely not as good as I used to be, technically. That’s exactly what I was afraid of. But I need to accept that this is how my hand moves now, and that maybe my style of drawing now will just be different. . .so what if I can’t do realism anymore? There are so many other art styles which are just as cool, and which I enjoy just as much. The change is the scary part, not really what comes about from the change.
I guess what I’m trying to say, in a long winded way, don’t get too down on yourself for being unable to get “back to” whatever age when you had no pain, or better mobility, etc. because, well, you’re not at that point anymore. Just accepting things for what they are can do so much for our mental health. I’d recommend this short movie on Netflix called Going Home, which has some good advice from Ram Dass. He may seem a bit “out there” to some, but his message is very important.
<3
That’s a good tip I will try compression when I’m running next time bc often that causes a lot of pressure. I didn’t realize how depressed I was until very recently. I dont enjoy much at all anymore it seems everything I do causes more pain so like your saying I need to come to terms and be content with the abilities I have, I started canoeing instead of kayaking and my finance will paddle for me. So while I get to enjoy the activity of being out on the water in essentially just sitting there and I cant seem to comes to terms with that. The hardest part is really my job. My job is so difficult every day! I want to be a nurse and I truly dont think it’s a good idea to continue on b.c. of my crazy hand. I dont want to find another one but I’m literally in tears every day that I work. I really appreciate all your guys support and tips it really means so much. I will look into this on Netflix later today I’m very interested!
Amanda