OMG, YESSSS! 
I could never find a pair of jeans that fit right! It was so frustrating because I favored one leg so much, it had way more muscles than my other leg that had the AVM. It was so wonky. It was as if I was like I needed two different pairs of jeans for each leg. I wore a lot of skirts. I like the really flattering flowy skirts that sort of hide everything. After my last surgery, I really focused on trying to use my AVM leg/side more so that things could even out. Iām sure they could do some physical therapy or something. I didnāt think about it at the time, but I should have asked for physical therapy after my surgery since I walked with a limp for so long. The older I get, the less insecure I feel about it, but when I was around 19-20, I HATED it when people would ask me about my AVM at parties and get togethers. I had a few people I felt comfortable wearing swim suits around, but if there were people I didnāt knowā¦ I wouldnāt swim. Looking back, I doubt people really cared as much as I did, but I was also afraid people would bump into me and make my AVM hurt worse.
When Dr.Rosen did your two surgeries,did he send you home in between them or did he have you stay while you recovered from the first and then went ahead and did the second? I live quite far away from new York so I would have to fly to and from and Iām wondering if he would send me on a plane back home with me in as much pain as Iām normally in after getting embolizations, or if he would just keep me there until he felt that he had treated me completely. I know that right now I have a hard enough time with travel because the only doctor that can treat me Is 4 hours away and the car rides home can be pretty awful.
They planned to do everything all at once on the first surgery. About two years later, I was having pain and they did the second surgery. Since it was technically two AVMs, they treated the one in my leg first and the second one came up later. It was really hard traveling around after the surgery. I stayed in the area a few days after at a hotel and then had a combination of strong pain meds for the plane ride home. I ended up sleeping most of the way, but the parts where I was awake were uncomfortable. Definitely let him know that youāre worried about traveling with pain and they might be able to give you something. I didnāt like taking pain killers regularly, but I made exceptions for the trip because it was so uncomfortable.
My main concerns with my AVM is the fact that Iāve been told it can lead to heart failure and loss of function in my leg because of the excess blood flow. Iām worried that if doctor Rosen is able to fix it enough so that I donāt need further embolizations, I will still be really paranoid about going into heart failure. Iāve got that stuck in my head and it terrifies me because Iāll always be thinking weāll itās fixed but what if something still happens to my heart.
But if the AVM is actually resolved, Iād think that would also resolve the excess blood flow, taking the pressure off your heart to work so hard. Any damage done so far would be done but I would hope it would at least reduce the rate of damage or stop it progressing.
Ideally, rather than worry about that in advance, itās definitely something to discuss with the doc.
I know you donāt want to get excited by the prospect but Iām busy hoping good things for you!
Best wishes,
Richard
Iāve heard that itās possible to have multiple AVMs on different parts of your body or develop another one later on in life. Do you have to regularly get scans to make sure you donāt have more AVMs anywhere else or how does that work?
There are definitely conditions which bring AVMs (and sometimes multiple AVMs) with them. I should look up some of the others but the one that sticks in my mind is HHT.
Iām less sure whether HHT often brings pelvic or uterine AVMs with it. It certainly is associated with heart/lung AVMs and brain AVMs.
Iāll let others answer re pelvic & uterine AVMs in particular because Iām less familiar with those.
Hi!
I hope you are Ok and that Dr Rosen has delivered good news.
Not an expert here and I do not know your exact situation but maybe I can share the information I have on heart failure and help you there.
Based on Schobingerās classification, your AVM has to be stage IV to lead to heart failure. Mine was classed as such as I already have an enlarged heart (cardiomegaly) due to the extra efforts it takes to circulate the blood down my legs as it is mostly diverted away in my pelvis. I was being seen by a cardiologist for that before we knew the AVM was the cause, so my question is : Are you being seen by a cardiologist for your heart? Have you got any symptoms?
I am awaiting for my first embolisation ( I was told I wouldnāt be in pain but I am quite worried now 
) and they are doing it to reduce the impact on my heart.
My understanding is if your AVM is āfixedā or āreducedā then your heart doesnāt have to work harder to pump all that extra blood around your body so no there is no chance of heart failure (for that reason anyway). Plus, despite all the extra work, my heart was pumping fine in December when I had my last tests so it is not because your heart is under strain now that it will give way.
As far as growing AVM elsewhere, I believe that AVMs are mostly congenital ādefectsā and they are rarely acquired (apart from uterine ones from miscarriages etc but they often can be removed). Multiple AVMs are rare and linked to certain genetic disorders such as HHT. I was referred to a geneticist who checked for any known conditions and I also had an MRI of my head, neck and upper torso to make sure nothing was there (everything else had been scanned plenty!).
Hang in there. I was originally told that any impact could rupture my AVM and that nobody could save me from the resulting haemorrhage. It is not true, well only a very very small part is true. My vascular surgeon said that lots of doctors donāt know anything about AVM and talk non sense. They either exaggerate or completely underestimate what it is. Find a specialist, get a team around you for support (medical and personal) and keep your spirits up. Happy to listen and offer support here.
Take care
Nathalie
PS: Long flowy dresses is what I go for as I look 5 month pregnant at best with my swollen abdomen! If I walk a lot, by the end of day, I look as if I am about to give birth so I shop in the maternity section too! 
I hope you have a better experience with your first embolization than what I have had with mine, I was told that I wouldnāt be in too much pain but for me they have been unbearable, but maybe it just depends on the person. Yes, I do see a cardiologist and I have since I was about 4 years old because I had a heart murmur and a pulmonary stenosis so at around age 4 or 5 they placed I believe a shunt in the murmur and around age 11 or 12 a stent in my pulmonary artery. I recently have undergone genetic testing to try to get some answers about my AVM and they have discovered that I have 2 mutated genes one of which is responsible for my heart defects and the other they said may or may not be responsible for my AVM. I go annually to have lung and heart check ups due to the heart defects.
Edit: still havenāt heard from Dr.Rosen, I donāt believe they have received my medical records yet, but trying to stay hopeful even though itās hard
Yeah. Heart complications worry me, too. I donāt know what to say about it. The best thing to do it just try to live a heart healthy lifestyle. I was so worried in my early 20s that I became a vegan and tried to eliminate anything artificial from my lifestyle. I wouldnāt use plastic. I refused to use teflon. I wouldnāt drink sodas or fruit juice. After a while, I lightened up. Iām not as crazy about my diet. I donāt worry so much about everything. I worked in senior living for a long time and that really helped me put things into perspective. I worked in Independent living, assisted living, and memory care. You start thinking about your own mortality a lot when youāre confronted by these kinds of health challenges. It was really helpful for me to be around people who had survived health challenges and were going through serious health challenges, but many of the seniors kept an amazingly positive outlook. They focused on enjoying their life every day. One of my residents would tell me, every day is a bonus. When you think about it, it really is. I feel like Iāve survived this horrible pain, and every day is a bonus now. I try not to worry too much about the future. I know I will probably be at higher risk for heart complications. It really sucks, but weāre really not promised a perfect version of life. I read Kristin Neffās book, Self Compassion. It helped a little. I used to get angry at my friends that didnāt have to worry about an AVM. I was so jealous that they got to have a ānormalā life when I was struggling so much. Now that Iām older, I see that some of the people I went to highschool with have had really serious struggles in their lives as well. Some of them have died from cancer or car accidents. Thereās a lot of terrible things that happen in the world. It is terrible to have an AVM. It is painful, it is scary, it is really serious. Sadly, a lot of people donāt understand how hard it is because not many people have them. It is really, really hard. It will complicate your life in ways that you may never have plannedā¦
BUT. Getting treatment is worth it. I struggle all the time with worrying that it might come back. I just have to believe that Iām living my best life. I donāt know what else to say. It isnāt all bad. Thereās joy through pain. You will have a more profound appreciation for life after all of this.
OMG. I worked at an assisted living/memory care and my residents would ask me all the time if I was pregnant. I hated it because I chose not to have children because of my AVM. I always felt guilty buying maternity clothes, but they were so much more comfortable! I gained some weight. I feel like the weight hides my irregular curves, but Iām trying to loose it.
yes, hang in there.
Since you had your AVM taken care of with Dr.Rosen, has it continued to cause you any heart strain or complications? Iām really hoping that if he is able to take care of mine one day in the future, and it isnāt growing anymore that maybe my heart wonāt be affected by the AVM anymore. Also do you regularly get scans and to check on your AVM and make sure it hasnāt grown anymore?
I looked Dr Robert J Rosen up today and his Lenox Hill hospital web information describes him as a cardiologist. He also has an AVM Center NY web site, so a vascular specialist overall.
I havenāt had any heart complications since my surgery. I had my routine check up and they did an EKG that came back abnormal, but not an emergency. They had me do a stress test where I had to walk/jog on a treadmill while they monitored my heart. The cardiologist here in Texas said that my heart looked fine. I donāt have to do routine scans to monitor the AVM. If I feel like I have a problem, I will go in and do an angiogram. The last one I did came back normal, thank goodness. It is stressful to worry that it might come back, but Iām really glad I did the surgery. I will also go back to Dr. Rosen if I ever have to.
Definitely keep calling and bugging his office. Iām sure they are super busy.
I can certainly relate to you about the AVM taking part of your youth and freedom. And I agree sometimes it is too much to handle and I think only someone who had or has an AVM can only understand. But lucky for you, youāve found us and perhaps we can make your hard days just a little more bareable so you can find a way to deal with this unfortunate monster we were all given to deal with here rather than drown in the overwhelming emotions that are anxiety and depression. I can assure you that most of us here have been there before. Chin up!! I assure thereās more to life than surviving this. I have learned (slowly) that itās the little things in life and boy am I now grateful for all of them. This is one slow journey weāre on, donāt be afraid to reach out to any of us. I promise we donāt bite :o)
Thank you I appreciate it
Update: finally heard from Dr.Rosen today and got some good news. He told me that obviously what my current doctors have told me about my AVM being like cancer and continually growing is incorrect. He said that with most AVMs if you can get the majority of the blood flow taken care of, you donāt really have to worry about it anymore. He also told me that heart failure is a risk with any AVM but he said it is a very low risk, maybe 1 or 2% of people with an AVM end up with heart failure, and he said as long as you can get the AVM under control, it shouldnāt be a concern. He also said that my nerve damage is most likely because my doctorās have used alcohol to embolize my AVM and he said he would use glue instead. Overall he made me feel much better and secure about my AVM and took away the fear of heart failure. He is optimistic that he can help me, so his nurse is looking into resources for financial help since my insurance wonāt cover me out of state and I donāt have an income. For the first time in a while I am very hopeful and relieved. Now I just have to hope I can get treated by him.
That is wonderful news! Iām so happy to hear that Dr. Rosen will be able to help!
Iām very hopeful now, he said as long as we can get the majority of the AVM embolized I should be fine. Now I just have to hope I can actually get there. His assistant is looking into financial resources to see what we can work out but I havenāt heard back yet. He said heās never turned anyone away before for not having insurance so hopefully I hear back soon.