Hi my name is Zahleen I was born in 2007 and was diagnosed with AVM in the early stages of my life.
I’ve been searching since I was a child for a community who understands and can help me learn more about AVM. Throughout my life I have never seen or heard of another person who shares my health condition so it’s honestly relieving to have found a place where people could relate to me.
I don’t know too much about the terminology around my AVM.
For me my condition extends from the top of my right hip down to my right foot and has been that way since I was diagnosed. It definetly strains my walking and running abilities and I have a permanent limp/bent knee that prevents me from standing straight.
I have very few pain coping strategies that get me through the day when I’m feeling sore but half the time I feel fine.
I hope to learn from other peoples experiences and to try and give advice where I can!
You have what we term an “extremity” AVM: i.e. it is affecting one of your limbs. The pain management for extremity AVMs is specific to that type of AVM, so I’ve added you to the @Extremity team and if you have a look on the home page under “Types of AVM” you’ll find an area where I try to gather all of the Extremity stories so you guys can hang together.
The largest group of AVMers we have in the forum have an AVM in their brain (I’m a brain AVMer) but there’s a goodly contingent of Extremity people here. We do have some Kiwis here and some Aussies. If you want to bump into those, I created a @Kiwis group and an Australians group which similarly have a space under the different support groups towards the bottom of the home page under “Oceania”. New Zealand’s population is pretty small but I’m convinced we have a handful of people who are Kiwis.
Welcome! Talk about anything you fancy, ask anything you fancy. I’m sure some of the others will welcome you in!
Hey @Zah ,
Welcome to Ben’s Friends
My name is Merl. I’m a member of the modsupport team here on the Ben’s Friends Network.
I too am a Kiwi, now living in Oz. Originally from down south, south of Dunedin. But lived in Wellington, Auckland and Nelson for a while. I’ve been living in Australia for many years now.
I don’t have an avm but rather a differing ‘space occupying lesion’ in my brain. I also found that finding fellow patients difficult, but you’ve found us now. I think having that…
can make the management of it all that much more difficult. If it was constant I would have a ‘constant level’ but fluctuating, my ‘level’ is never constant As I’ve often said to others “Some days I can ‘leap a tall building in a single bound’ (OK, so a bit of an exaggeration) But then some days I’m lucky to be able to crawl out of bed” and I never know what today will throw at me" I just have to be prepared to deal with it. Some days I manage OK, some days it all manages me. It’s not easy
Richard has given you some good information to get you started with some of the terminology and others will contribute. I’m sure you’ll have questions, so ask away. We’re always here to help.
Welcome @Zah Zahleen to our fighter forum of AVMers . My son has an AVM in his brain and in a week it will be 2 years since he had his Embolization procedure at Houston Methodist Hospital and Gamma Knife in March of 2024. It has been an experience even after the procedure with many emergency visits to ER due to right side sudden numbness. Seems to be better now and more stable. My son is 25 in college and with a job. We send you hello from Texas (South).
Thank you for all if the information it’s very helpful and since signing up for an account I’ve been reading through many extremity stories and have found it helpful.
Thank you also for making me feel welcome it’s nice to know that there’s a group for people who are similar to me.
Nice to see another Kiwi I didn’t know if there would be any here. I relate to your phrases of some days being great and others leaving you being lucky to even crawl out of bed.
Thank you for your reply and making me feel welcome I definetly enjoy learning about peoples stories that are both similar and different to mine.
I can relate to the late night ER visits but I’m so stoked that your son sounds to be doing well, I hope for the best for you and your family. Hello from Wellington!
Hi Zahleen! I am so glad that you found this site. I do not personally have an AVM but my 12 year old son was diagnosed with an AVM in his brain when he was 10 years old. He has now had staged embolizations, a craniotomy and stereotactic radiosurgery and is doing well.
Although I do not have advice specifically related to an extremity AVM, I will say finding this site while going through this has helped me tremendously on this journey. I hope it will be as much of a benefit to you.
We are in the mountains of East Tennessee and say welcome!
As I’ve often said to others “Some days I can ‘leap a tall building in a single bound’ (OK, so a bit of an exaggeration) But then some days I’m lucky to be able to crawl out of bed” and I never know what today will throw at me" I just have to be prepared to deal with it. Some days I manage OK, some days it all manages me. It’s not easy