Hello everyone, I’m Patricia. I was diagnosed in 1968 with my AVM. At that time, it was leave it alone. If they did surgery I could lose the use of my arm or hand or both or the AVM could come back. When I was 19, I started birth control pills. My arm became red, hot , swollen & I could not stand for anyone to touch it. I was told by a physician to try baby aspirin. Well that worked & ever since then when I have a flare up, I use the aspirin. What I’ve read on here says that’s a big no-no. My AVM is predominantly in my forearm, although I can raise my arm & push it into my upper arm. It’s really strange. Can anyone else do that? In 2007, I was having for frequent pain. I was sent to an orthopedic oncologist who sent me to interventional radiology. They recommended embolization. The first embolization was with an alcohol type substance. It was quite painful but it got better fast. The 2nd two embolizations were done with some sort of gel. On the second one, I woke up during the procedure in terrible pain, the radiologist said they hit an artery instead of vein. They knocked me back out & when I woke up, more pain & a red mark that they drew a line around he border. It got bigger & the flesh started to die in that area. It was the most painful ordeal I have ever experienced. It has since healed but it is really scarred like a bad burn would be. I am now 63 & recently was typing & a bolt of pain with through my arm from the elbow to wrist. The pain was mostly withi would try to rotate my arm. I went to my family physician, he did an X-ray & my ulna had a fracture with a piece of bone sticking up. When I rotated my arm the ulna nerve & tendon are right there. Has anyone else had this happen? I was told that my AVM is also in my bone. The radiologist wanted to embolize the bone but after the last one, I was too afraid. If we have AVM’s also in the bone, will I constantly be fracturing my arm? Just curious if anyone else had something like this happen.
Welcome Patricia! Its great you are here with us, too bad there is a reason, hopefully we can be of some assistance. I’m a brain guy, so way different than your AVM. You are certainly one of our longer tenure AVMers since diagnosis, so Im sure your lived experience is amazing. I do know in respect to the aspirin, in my case, they did not wish me to use it due to potentially impacting clotting. I had one brain bleed that clotted, and they didn’t wish to have any influence if a second bleed occurred. I was fortunate to not have a second one, although it would be worth asking a Dr. My unmedical trained guess would be if it relieves pain, and is accessible for pressure if bleeding did occur it may be okay. I would ask for sure. the fracture part is the first I have heard so I look forward to hearing if any of our crew has experienced similar. Have you has any blood work, ie// calcium levels and that sort of thing done recently? I would think a GP should do some follow up to see if any other factors are at play. Sorry I couldn’t be more help! Take Care, John
Thank you John, I was 8 years old when I was diagnosed & it was even more rare then. I’ve mostly ignored it the last several years but now it is certainly reminding me that it’s there. I type all day so when it happened, it was quite a shock. I had not fallen or anything. I’ve had blood work recently but nothing remarkable. I’m due for a dex scan in February but that doesn’t check the bones in your arm. Right now, my family Dr gave me Voltaren gel for my arm & it has really helped. It’s not a break all the way through & he wants me to keep using it, although nothing heavy or pushing or pulling with it. If it’s not better in 4 weeks or if it gets worse, he will refer me to a specialist. So far, it’s a lot better. I do yoga & planks & right now, I can’t do that. My family physician is researching this. It seems that AVM’s in the brain & extremities behave somewhat differently. Of course researching on the internet can be a double edged sword. I see that the heart can become involved when it’s the brain or spine but I’m not sure about extremities. My forearm used to be a lot bigger but now I’m getting all these lumps & bumps in it like some of the veins are bulging. I haven’t had an MRI on it with contrast since 2008. I know I’m long overdue.
Hello @Pittypat
It’s great to have you join us.
A large proportion of people here are brain AVM people (I’m a brainer, like John) and the advice re blood thinners for brain (and probably spine) AVMs is to avoid thinners if there is still a significant risk of bleeding – e.g. prior to any treatment and possibly afterwards, depending on the situation. If one were to have a haemorrhagic stroke and be on thinners, it is going to make more of a mess, I assume.
However, I guess that’s not the same risk with an extremity AVM and it is interesting that you were given that advice all those years ago (and that it seems to have served you well). Have you consulted on that recently, too? Is the advice to continue with the aspirin? Advice can change significantly over such a span of time.
I’ve no idea about your fracture. I do think I’ve read of one other person mentioning involvement of a bone. I’ll have to have a think and a look round.
Meanwhile, I think your closest friends will be those in the @Extremity group and I hope some will be able to share some experience. I’ll add you to that group.
Welcome! It’s great to have you on board and I’m sure you’ll be able to help others along the way, just as we each receive a little help and encouragement.
Very best wishes,
Richard
Hi PittyPat,
I also have an extremity AVM. Mine is in my leg, but the nexus is in the bone. I haven’t had any trouble with bone weakness but I’ve had regular embolizations done since I was 18 so it never gets that big.
At least at the hospital and IR surgeons I’ve seen, there have been no complications. I’ve had work done via catheter (probably easier to treat a leg vs arm when accessing via hip) and Bleomycin injections through the skin. Both help but it’s nice not going under all the time so I prefer Bleomycin when possible.
I don’t have much else to add. These things are trouble and I’m sorry its still an issue for you after such a traumatic surgery. And broken bones are the worst! I hope it heals quickly.
Without knowing much more about you situation, I might suggest finding someone who really specializes in AVMs so you can talk to them about options. In my experience, primary care docs are clueless about the particulars and it’s a rare disease with many variations so experience matters.
Best of luck.
Hi Patricia, like you I have an AVM in my arm. My arm is completely affected from my fingers to my shoulder and very malformed. Veins, arteries, nerves, muscles and bones. In my experience AVMs in extremities are extremely painful particularly where bones are involved. Despite having many surgeries and scans I didn’t realise how much my bones were affected until the last few years. I have recently been told I am at high risk of breaking it. Although I hadn’t realise it could happen like yours did. It must have been a big shock for you.
I am aware mine affects the periosteum layer of my bone and that it’s like I have multiple fractures throughout my arm. this is obvious from x-rays etc. They reckon that is what is causing quite a bit of my pain. I am so sorry to hear about your break. It’s scary for something like that to happen in a normal limb but for us it is so much more complicated. It is one of my fears.
In terms of aspirin, I have been told to avoid it. I have had both embolisations and sclerotherapy. It was the embolisations which they said not to take aspirin for. I had alcohol and glue. I actually take blood thinners each day and have done for 15 years plus. I find this very helpful for pain as I suffer with quite a lot of the phlebitis (smaller clots) and so blood thinners help me. It may be worth speaking to your doctor. I was on clexane but I am now on apixaban. Certain ones are more suitable than others.
The main challenge we have is finding doctors who know enough about our condition so that the treatment options they offer are the most suitable. I have met many well meaning doctors but I am very careful now as I don’t want to risk making it worse. I am very lucky now to have access to wonderful doctors and I’m actually on a drugs trial currently which does seem to be helping.
It can be lonely suffering with AVMs as it is not easy for other people to understand what it is like. This is why this community is very important.
Anyone with an AVM suffers individually to what they experience and where it is. The nature of AVMs is that they are not all the same. My advice with arms is that we end up using it a lot which increases pain. You mention typing for your job. There are technologies like dragon software which enables dictation rather than typing. Ask for help, don’t carry too much etc. the more you use it, the more it will hurt. Sounds obvious but hard to do in reality.
Oh Maryg, I feel so fortunate to have found you. Baby aspirin was given to me to basically thin my blood but only when I am having issues with a blood clot. I am now having issues with saying certain words & my hearing. I will have a brain MRI on the 26th of this month. It is not known if it has anything to do with the AVM. So it sounds like your AVM might be somewhat similar to mine. I know it also has invaded bone & muscle & I can raise my arm over my head & push it into the upper arm, then watch it refill where it is mostly in my forearm. It used to be twice the size it is now but has reduced in size since the embolizations. Have you had your bone embolized? That is one thing I haven’t done since my last bad experience from an embolization but I’ve been told that needs to be done. Are you close in age to me? You are the first person in all my 63 years that I have known with an AVM in the arm.
Hi, there are a few of us on this site with arm, hand or finger AVMs. If you look at some of the extremity stories you may find them. It is a rare condition but I’ve learnt we aren’t alone, it’s just not exactly the same in each of us. I’m in my mid-40s. I hope your mri comes back okay and that it isn’t related. I have never been offered embolisation of my bone and my surgeon would definitely do that if he felt it was a good idea for me. My advice would be to question them about why they say it must be done and to find out the risks. Due to the fact that we have extremity AVMs and it involves blood supply there is always the risk of losing some or all of the limb. Therefore any surgery carries risk, however I have also been told (my wrist is very affected) that if they do nothing over time I may lose my hand or fingers because it will naturally lose blood supply. There are a lot of non surgical options now involving drugs. I’ve been on two others before and I’m now on a third. It depends on how your body reacts and side effects. It’s worth asking about treatment options that are non surgical. I have read so much via the internet so I understand the condition as much as i can so i can question and challenge the doctors. One key thing is to find out if your avm is low or high flow. They are both AVMs but the consequences and risks are different.
So surgeons and radiologists like to operate. Their nature is to cut or solve the problem in an operating room. That is great and is sometimes needed but there aren’t AVM doctors who just treat us and monitor us. You get different doctors for different parts of our needs I.e. pain specialists, haematologists. Sometimes their priority is the same as ours sometimes it isn’t. I’m not bothered what mine looks like, I’m bothered by the pain and functionality etc. therefore I don’t want to entertain or think about surgeries unless it helps with my pain.