Hello, I had my first direct stick embolization with dr. Rosen at Lenox Hill Hospital in April. After the first time there was still residual malformation left and my hand still swelled up and caused alot pain. In October I had my second procedure done and have few blood clots that I believe expected to block off circulation in the are. It is very painful and have my follow up next week. It’s honestly very frustrating because im a nurse and even the doctor I work for has never heard of the procedure or any of this and there is very limited information. My job is very hands on and it is really upsetting not being able to use my hand with my job fully. Im becoming very depressed especially trying go back to school and keep having these procedures holding me back. im only in my early 20s and both my parents were diagnosed with cancer this year and I was just told this will be a lifelong process. I just need some encouragement. Also I have a genetic counselor appointment next week as well to get more information. Does anyone know what can be causing these or they can test for to give me some answers.
I’m sorry you are going through all of this. Whenever you need to talk to someone, feel free to ask here. I hope some of the @Extremity group will have useful thoughts to share as well.
In terms of the genetic counselling, I assume the hospital are wanting to check out that you do or don’t have some underlying genetic thing that is driving your AVM. My understanding of it is that it will help them to decide whether some treatments are safe / appropriate for you. I think there are conditions such as Klippel Trenaunay and Parkes Weber syndrome that can be the underlying cause for an extremity AVM, so I assume they want to rule those out.
Life is full of challenges. Sometimes they all pile up in one place at one time and sometimes there are gaps. It sounds like you’ve got a lot going on at the moment but it won’t always be like that. Honest.
Very best wishes,
I had sort of a simliar experience! I was diagnosed with AVM in my left arm with I was around 7 years old. I went through embolization ONCE at age 21 and it’s never fully healed. The skin around the worst malformations is basically dead now, so I don’t want to go through with anything more. Makes me wonder about possible KTS / PWS as mentioned above.
It is a lifelong battle. remember that it’s a part of you, not a problem that isn’t you. i’ve found that mantra to be quite helpful <3
Thank you so much. It’s honestly alot to handle and finding out these procedures will be a life long battle its so upsetting especially at such a young age. They did say it is hereditary which is why I want to see a genetic counselor and okay thank you so much I will definitely mention those too the genetic counselor when I see him.
Im glad to hear there others in similar situations. Im so sorry your procedure ended so horribly. My first avm was around 12yrs old. Yeah maybe best to be tested for those two things before these procedures do more harm then good. I honestly just want some more answers to why these are happening. thank you so much I love that and your right!
Having an AVM is a tough thing and especially at a young age. In some ways I hope you can remember to look at some of the other things we could have and remind yourself that what you’ve got you can cope with.
The other thing I remind myself of is that if ever there were a period in time to have an AVM, the early 21st Century is not a bad time at all. I am absolutely convinced that my grandfather had a brain AVM as he had regular nosebleeds, migraines and eventually pre-senile dementia. He was born in the late 19th Century and was not diagnosed, never mind any treatment.
There is every reason to believe that treatment may get better for these things and what’s not possible today may become possible in your lifetime. It’s not to hang your hopes on but we live in a much better time than we might.
Stay positive. You’re worth it!
I definitely feel you in terms of wanting more answers! There doesn’t seem to be very much information available to help us answer the “whys” of it all…
As a kid, I remember my doctors telling me that a red blood cell “got confused” while I was in-utero (I have CM-AVMs as well as AVFs, etc, not just a few AVMS), which resulted in the mess that is my left arm!
And sometimes things are as simple as that, something went wrong for no apparent reason. And thats okay. I’ve come to learn that everyone “has their thing” – my boyfriend has asthma, my roommate has endometriosis, my best friend has IBS. No one is born perfect! Talking about what we are dealing with medically is the best way, I think, to help yourself and everyone around you feel supported. At the end of the day, we’re all in this life together!
That’s how I deal with my AVMs on a more, like, spiritual level, I guess. Of course, the pain that comes along with them is a whole different story! Still trying to figure out how to manage that one
I can definitely relate to being frustrated about how little information there is about this. I’ve been the one who had to educate my avm dr. on different treatment options lol Also as far as genetic testing depending on what they find, there are different chemo drugs that are approved to treat different gene mutations
I AM a retired nurse. I planned my career around my VM disability. Psych nsg was grand!
Then I did school nursing, so I could sit more. My VM is in my left groin to thigh. Gravity is my foe. Irrelevant plans for you, but the point is the same. We worked so hard to be RNs. It is a big part of my identity, tho I know longer practice nsg due to my disability. Perhaps you could work for an insurance company, and provide nursing care via fone or internet. When I was recovering from a dble mastectomy, my daily fone contact with my Aetna RN was outstanding nursing guidance. She even authorized OT visits since my mobility was so impaired. I am certain it is difficult for you to give up those hard earned nsg techniques that require full hand ROM. But I was able to learn other ways to strongly identity as a nurse.
Shannon Marie- You may or may not have reoccurring problems with your AVM.
I had 6 embolizations over a period of 9 months. My AVM is/was in my left heel area. The AVM has been in total remission since December 2017. No new growth, no pain. It took a little while, but my foot became totally functional again. I have hiked many miles through our Colorado mountains in the last week or two. No pain, limp, swelling, heat… best of luck to you! Mychal