I found out that I have a hemangioma in my neck at C7 in my verteral body. I don't see the doctor for another month. I was wondering if a hemanhioma is in the same family as an AVM because I also have an AVM in my brain. Any information would be great.
Thank you.
Brenda Dinch
Hi Brenda,
I’m assuming you’re referring to a cavernous hemangioma in your neck?http://www.angiomaalliance.org/pages.aspx?content=60 and yes, they’re in the same vascular ‘family’ as the AVM.
I know it’s a confusing and scary place to be! At this point, is your doctor recommending surgery?
Take care,
Patti
http://www.aans.org/Patient%20Information/Neurosurgical%20Patient%20Stories/Patti%20Gilstrap.aspx
http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork
Hi Patti, the only thing I know is that on my MRI report it say’s they found that I have a hemangioma in my neck at C7. I called my doctor to find out what it means and he said he will tell me at my next appointment.
Patti Gilstrap said:
Hi Brenda,
I’m assuming you’re referring to a cavernous hemangioma in your neck?http://www.angiomaalliance.org/pages.aspx?content=60 and yes, they’re in the same vascular ‘family’ as the AVM.
I know it’s a confusing and scary place to be! At this point, is your doctor recommending surgery?
Take care,
Patti
http://www.aans.org/Patient%20Information/Neurosurgical%20Patient%2…
http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork
I know this is a few weeks old but I’m interested to hear from you Brenda about what the doctor said. My son, who is HHT positive, has an angioma. While dealing with 2 other children that have multiple CAVMs it isn’t very comforting to hear that an angioma isn’t a big deal.
Christine,
Like AVM’s, CM’s (also known as cavernous angiomas) are overlooked by medical communities and are ‘unknown’ by the general public. 
Beyond very frustrating, yet all the more reason to be our own advocates and to get other professional opinions if the present one isn’t fulfilling yours/families healthcare needs.
All the best,
Patti
http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork
Christine said:
I know this is a few weeks old but I’m interested to hear from you Brenda about what the doctor said. My son, who is HHT positive, has an angioma. While dealing with 2 other children that have multiple CAVMs it isn’t very comforting to hear that an angioma isn’t a big deal.
Hi Christine, I went to my family doctor and he said that I have a hemangioma in my spine at C7. He doesn’t know much about them so I am stuck right now because I just moved from west virginia to Maryland. I went in march to see a neurologist at Johns Hopkins and he took all of my scans. He said that his team would look at my scans of my cerebral avm and get back with me…I have called every week since march with know answer. He did say that my AVM is very large and most likely they wouldn’t be able to help me but he could just talk to me and tell me that. I had genetic testing at pennselvania and the test said I didn’t have it but they think I do have it…which I don’t understand. They think I have it because my mom also had a cerebral AVM and I have telengictasias in my mouth, nose bleeds and polyps at age 18. They said they think I have another form of a gene, they are still looking for the gene and it may take years to find it. So a hemangioma is really the same thing as angioma?
Christine said:
I know this is a few weeks old but I’m interested to hear from you Brenda about what the doctor said. My son, who is HHT positive, has an angioma. While dealing with 2 other children that have multiple CAVMs it isn’t very comforting to hear that an angioma isn’t a big deal.
Brenda,
I’m assuming they are the same thing. I’m reading your story and I feel so badly for you. What the hell are the doctors thinking? They should have gotten back to you immediately. Please get a second, third and fourth opinion. I wish you were here in CA, there are some AMAZING doctors here that have dealt with many AVM patients.
As for the HHT. Obviously you have it (telangiectasies, family history and AVM are enough to satisfy the criteria) and testing isn’t really necessary to make the diagnosis but I’m curious because you said they told you they couldn’t test for it. It is my understanding that they can find the mutated gene even if it isn’t one of the typical ones. Have you been to an HHT center or doctor? Have you had chest and abdominal scans?
Take care and please keep me updated. I know how difficult this process is. What is sad is that the doctors are supposed to be a source of support and comfort, not a source of stress and frustration.
I’ll be praying for you
Christine