Update! went to the doctor today and I have 3 avms,2 in right lung and 1 in left being sent to lung specialist. they suspect I have HHT
There also sending me for CT on spinal cord to make sure i don’t have one there.
There wanting me to have my siblings screened for AVMs and also my children. At least I know now and It was caught early! Now just reminding myself I am still the same person but I have a condition! God will see me through all of this I know!!!
Hi Tina - I have HHT as well. I was just diagnosed this past winter, but of course have been dealing with my crazy symptoms pretty much my whole life. Getting the diagnosis really helped me feel like I wasn’t insane, and helped me to feel like I at least knew which direction to turn (I know that sounds flakey, but I am going to guess that you what I mean 
I have been blessed to find Dr. Faughnan at St. Michaels Hospital in Toronto who is a world renowned HHT specialist. She is amazing - I am so thrilled that I found her.
I had about 12 avm’s in my left lung and they have been embollized over 2 separate procedures @ St. Mikes. I just had an exploratory cranial angiogram this past Thursday and lo and behold…I have an avm on the left side of my brain. I’ll find out how they plan to deal with it in the next week or so.
One minute, I am grateful that I have my diagnosis, and grateful that they can look inside me and fix the spots that would have otherwise been catastrophic at some point in my life. Then, there are days like today as I recover my my angio, when I really just feel tired of putting on a brave face.
Is there an HHT specialist near you?
Hang in there…
Pat
I have no Idea I guess when they send me to the Lung specialist he would probably know I am lost not knowing and scared that there may be more some place else! do these things just grow out of no where at any time? Is there life style changes I need to make to help prevent them like eating and vitamins or smoking? I mean I have no idea what to do! and yes I know what you mean glad to at least know why I get pneumonia all the time and sick easily. I have already contacted my family to get my sisters in for a screening for AVMs and I have already made apt for my kids to be checked.I have gotten a lot of info from the web but some questions aren’t answered.I guess I need to ask around to see if there is one close to KY or Huntington WV. Thank you for talking to me! I cried like a baby when i first found out but I am ok now,Just going to keep my chin up and be thankful it was caught before something bad happend.
Patricia Duguay said:
Hi Tina - I have HHT as well. I was just diagnosed this past winter, but of course have been dealing with my crazy symptoms pretty much my whole life. Getting the diagnosis really helped me feel like I wasn’t insane, and helped me to feel like I at least knew which direction to turn (I know that sounds flakey, but I am going to guess that you what I mean
I have been blessed to find Dr. Faughnan at St. Michaels Hospital in Toronto who is a world renowned HHT specialist. She is amazing - I am so thrilled that I found her.
I had about 12 avm’s in my left lung and they have been embollized over 2 separate procedures @ St. Mikes. I just had an exploratory cranial angiogram this past Thursday and lo and behold…I have an avm on the left side of my brain. I’ll find out how they plan to deal with it in the next week or so.
One minute, I am grateful that I have my diagnosis, and grateful that they can look inside me and fix the spots that would have otherwise been catastrophic at some point in my life. Then, there are days like today as I recover my my angio, when I really just feel tired of putting on a brave face.
Is there an HHT specialist near you?
Hang in there…
Pat
Hey Tina,
I’m sure this is all a bit overwhelming for you. It sounds like you have some good docs looking out for you, making the right diagnosis and looking into the possibility of the related syndromes.
There isn’t anything really you can do with a lifestyle change to make these “better” per se. But of course eating healthy and quiting smoking…well they certainly won’t hurt. Specially the smoking part I would think would be a big no no for a lung AVM!
You should get in touch with Steve-
http://www.avmsurvivors.org/profile/LTCRStevenMCarmichael?xg_source…
He is in KY and has been very happy with the doctors he has gone to for his facial AVM.
You may also contact this doc in Boston. He is on the VBF (Vascular Birthmark Foundation) website a the “ask the expert” for internal lesions.
http://www.birthmark.org/node/70
And no, they don’t just grow out of nowhere. It is a malformation that has existed since birth. Having said that, you could have some of the malformation that has just never been “active.” Those could show up later and seem like new ones growing from nowhere, but they were always there to begin with. Also, trauma can jump start some AVM. The “new growth” that you may interpret comes from those vessels getting messed up (embo’s, surgery, other trauma) and then sending out angiogenesis factors to “repair” that damage and recoup. That is when canalization occurs and the AVM makes detours around the blocked vessels. These can spread the AVM depending on how much it re-canalizes.
Good luck!!! You also may want to join the extremity group here, or do an advanced search under the member tab to find others with “lung,” “pulmonary,” and “HHT.”
Thank you pat! I have gotten some real good education on this thing now and I am not so afraid now! Most I had to learn on my own with the help of the hht.org! I wish you all the best in your journey with HHT! I guess we just learn to live with it and do the best we can now! Hugs!
Patricia Duguay said:
Hi Tina - I have HHT as well. I was just diagnosed this past winter, but of course have been dealing with my crazy symptoms pretty much my whole life. Getting the diagnosis really helped me feel like I wasn't insane, and helped me to feel like I at least knew which direction to turn (I know that sounds flakey, but I am going to guess that you what I mean :)
I have been blessed to find Dr. Faughnan at St. Michaels Hospital in Toronto who is a world renowned HHT specialist. She is amazing - I am so thrilled that I found her.
I had about 12 avm's in my left lung and they have been embollized over 2 separate procedures @ St. Mikes. I just had an exploratory cranial angiogram this past Thursday and lo and behold...I have an avm on the left side of my brain. I'll find out how they plan to deal with it in the next week or so.
One minute, I am grateful that I have my diagnosis, and grateful that they can look inside me and fix the spots that would have otherwise been catastrophic at some point in my life. Then, there are days like today as I recover my my angio, when I really just feel tired of putting on a brave face.
Is there an HHT specialist near you?
Hang in there....
Pat