I have been dealing with many PAVMs over the last few years -- I have had 13 embolizations to date, and I have many more untreated.
My question is regarding the presence of AVMs without feeder vessels. I have been told that I have over 100 PAVMs, but most of them are small or do not have "feeder vessels" and are, therefore, not treated.
My doctor(s) are not HHT or AVM specialists -- I am just wondering if anyone else has a similar situation/history and what, if anything, became of it.
I would call someone who specialized in HHT/AVM. Dr. Hillenbrand and Dr. White treated my son (non-HHT, but pulmonary AVM). Both are at Yale Medical Center (http://www.hhtavm.org/)
Hi I have HHT and Multiple AVM's throughout my whole body that I've been told are not treatable. It's good to know I'm not the only one in this situation.
I don't mind talking about it to you if you want :)
Hi, I have HTT and Dr. White sees me and my children. I have three out of four with the HTT. One had a brain avm and the other two have micro-avms in their lungs. I had a stroke. I did't know. I know that mine was two big clumpy blood clots in my lung. We are supposed see doctor again in the summer. Sorry if this hard to read I have aphasia.
I know just how you feel about wanting someone who knows exactly what he is doing. It's a sticky situation. Does you call someone? My Dr.s called Dr. White.
Have you found any additional help/information? What are your symptoms? I have thousands of micro avms (gotten bigger and are now seen on my ct scans) bilateral (no hht or liver disease) and have never had symptoms until 18 months ago after a prolonged infection. It is debilitating. I use to be a distance runner and now have difficulty walking a few blocks. I have had two heart attacks and 11 procedures in 14 months, including 4 cardiac caths and one with a pulmonary angiogram, where they found the pavms, but they could not treat. There is still no treatment for me at this time (just monitor at least every 6 months) and they will not embolize due to risk factors. Have you found any answers?