hello everyone, my name is tea and I’m from PA. I am a patient who had a brain avm when I was 6 months old i did have brain surgery and was paralyzed at 6 months old caused by my hht that wasn’t diagnosed until 21 when i was 6 months pregnant with my second child.my mom has hht and my 3 year old daughter have hht and 3 brain avm. im taking it day by day and hopefully i can gain a lot of knowledge from this platform . sometimes its depressing when your surrounded by people that don’t understand your daily struggle. if your able to share info please do i will greatly appreciate it
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I had an AVM in my left temporal, so my experience is quite different. I do understand some about those around not having the foggiest about some of the things we experience. We have several HHT members here, and hopefully will be a good help for you. While most of us do not have HHT, we will all be here for you and do what we can, share experiences and support you in anyway we can. Take Care, John.
Ms. Marianne Clancy is President of CureHHT.org. She may be a helpful resource for you. Also I make mention of current and a host of other resources in my book (no pressure to buy) “Malformation: when bad things happen to the right kind of people” from Westbow Press written by me! I’m not a doctor but 4 time ruptured AVM survivor. Blessings as you continue, grace and peace as you go!
Welcome @tea! It’s great you found us, though less than ideal to have an HHT diagnosis.
As well as the resources that Paul has shared with you, we have a decent contingent of HHT members here in our @PulmonaryHeartHHT group. I took the liberty of adding you to the group.
My experience of reading the stories of others here is that often HHT is identified when someone discovers first an AVM or bunch of AVMs in their lungs, which is why the group is a bit of a join of pulmonary, heart and HHT. I hope that by tagging the group in this post, some of the others will say hi.
You’ll find many more stories from HHT and pulmonary patients in the types of AVM category:
Very best wishes,
Richard
@randombeggar
Hello
I hope you don’t mind me being blunt. How did you survive 4 bleeds? How come you had the first bleed and then the others weren’t treated?
I had 1 bleed and like you had to relearn how to walk and talk. I survived because I was 19 and super fit plus a lot of great health workers.
Tim UK
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Hi @Timb. I’m not sure medically how I survived. Especially considering how the survival rate when my first AVM ruptured was 50% back in 2000 and I had 2 rupture the same summer! I rehabbed and relearnt to walk, talk, read and write. I finished college and enrolled in grad school but ruptured from another they missed in 2010. I then moved and got on with my life but had this nagging feeling I should get scanned again. So sure enough, in 2018 I had a stroke. I wrote a book about my story and warn the reader at any time if they have a family history of AVM or the doctor says they should get a CT scan they should. You very well could save your life and possibly the lives of your children. I wrote “Malformation: when bad things happen to the right kind of people” to that end. Blessings as you continue, grace & peace as you go!
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Btw, not blunt just to the point, thank you for that! I should mention there are apparently different types of AVM. The President of CureHHT is Ms. Marianne Clancy. (www.curehht.org). They do a pretty astounding amount of AVM research. For anomalous AVM or not hereditary or genetic, make sure you tell your neurologist and treatment team. Finally, I wrote a book “Malformation: when bad things happen to the right kind of people” that is basically a survivors guide to long with and after an AVM. It deals with the practicals of AVM life. Blessings as you continue!