Cavernous Hemangioma or Caveronous Malformation

Hi:
We just learned that our 8 y.o. son has a Cavernous Hemangioma on his brain stem, the pons of his brain stem to be exact. These are extremely rare we are told. In my research I have discovered that these are in the family of AVM’s but are different in that they are connected to lower blood flow veins or arteries, whereas AVM’s are connected to higher blood flow arteries. I am posting here as I have had AVM’s and I want to ask if anyone here is familiar with my son’s type of hemangioma and if anyone has heard of Osler-Weber-Rendu syndrome also known as Herediatry Hemorrhagic Telangietasia? My hematologist suggested my son and I may have this. Anyone with any experience with Caveronous Malformations/Hemangiomas. We have consulted with one pediatric neurosugeon and will have a second consult with another out of town in less than two weeks. We are trying to figure out what is best for our son. Thanks all.

Hey Kimberly! Yep they are related for sure. And there are others here on the board with this. I would suggest doing a search in the forum and blogs for “HHT.” Many people have tagged their posts and it should get you connected to the right people! I just messaged with someone yesterday but can’t for the life of me remember who!!! I’m blaming it on the drugs still in my system from my embo on Thursday! I’m not sure that can really be used as an excuse, but I’m stickin with it!!!

And I know there was someone a while ago posting about Cavernous ones. I think it was a young man. But if you search the blogs I think you will find him too!

Good luck!
Shalon

Thank you for the information Shalon. I appreciate it. My husband & I are really trying to understand about our son’s brain stem Hemangioma. Evan is only 8 y.o. and he is a twin. As far as HHT goes, or Hereditary Hemorrhagic Telangiestasia goes, we will try to be tested to see if we are, in fact, carriers of the gene. My hematologist recommended it. I learned also that a fraternal uncle of mine has a brain AVM which he just found out about a month ago. Just too many people in my family with these things. My AVM’s were in my stomach and in my intestines. I am fine for now and now worry endlessly for my son. I do not sleep much for the fact that he has many night time episodes where he wakes heaving, tremoring/shaking, gagging, then he vomits. He does not respond to us when these episodes occur nor does he remember–it sometimes occurs when we are out or at school but not often. He had a one hour, daytime EEG but it came up with no seizure activity. We await scheduling for an overnight EEG/sleep study for Evan. He has had these episodes since he was a toddler and no one ever looked in his brain until this June!! All we ever were told by other docs was it was gastrointestinal problems or anxiety or sleepwalking (uh! sleepvomiting is more like it!) We will travel to University of Florida at Gainesville Shands Hosp. to see another neurosurgeon next week. Wish us luck. We are very confused right now. Thank you again. GRATEFULLY, Kimberly
Shalon said:

Hey Kimberly! Yep they are related for sure. And there are others here on the board with this. I would suggest doing a search in the forum and blogs for “HHT.” Many people have tagged their posts and it should get you connected to the right people! I just messaged with someone yesterday but can’t for the life of me remember who!!! I’m blaming it on the drugs still in my system from my embo on Thursday! I’m not sure that can really be used as an excuse, but I’m stickin with it!!!

And I know there was someone a while ago posting about Cavernous ones. I think it was a young man. But if you search the blogs I think you will find him too!

Good luck!
Shalon