CAPILLARIES! Does anyone have any other medical issues like DISEASES or trauma that they think could have caused the development of thier avm? I have MIXED CONNECTIVE TISSUE DISEASE!

I was just wondering because several of my doctors think that i might. (Traci Frecht and William Cauldwell of U of Utah hospital) My father has a rare soft tissue disease called Mixed Connective Tissue Disease. It can be somewhat hereditary and is like an acute form of rheumatoid arthritis. Its caused him to be hospitalized and he is losing lung function because the capillaries in his lungs are not growing properly. His disease causes the your capillaries in his lungs to constrict and die from inflamation and scarring. Other than your brain, your lungs, are the next organs to have the most numerous amount of capillaries and complex arteriovenous structure. However, unlike your brain the muscular tissue that forms your lungs and the function and purpose of the organs would make it less likely to allow an AVM to grow in the lungs. Also the formation and growth of the brain and lungs both pre and post birth is very different. The relation of the two medical conditions is that in both there is a problem with the capillaries. I believe that the failure of capillaries in the brain stimulates the arteries and veins to grow and become the malfomation to try to compensate for the bad capillaries and deliver blood. in the lungs this isn’t possible. the capillaries failure causes the tissue to slowly die over time. Both are caused by failed capillaries say my docs Dr.Robert Spetzler, Dr. William Cauldwell, and Dr. Traci Frecht have said and are looking into possiblly conducting a study to see if they could have some underlying cause. Both my father and i are healthy non drinking non smoking individuals who grew up on an organic farm with no history of illness.

Hello Tanner:
I have a dura arterio venous fistula which is simiar to AVM’s, only a little more rare. Mine is located on the surface of the brain, and so far I have had 3 embolizations and will have the gamma knife procedure next week.
The doctors attribute mine to trauma to the head. I was in combat during the Korean War and exposed to a lot of concussion from shells exploding near me. I was also in an auto accident in 1965 and suffered a skull fracture along with numerous head and face lacerations. (We didn’t have seat belts then)

As this happened while in the military, the VA has been picking up the tab for my treatments.

Yes AVM’s and DAVF’s can be brought on by head trauma. Most people are born with the AVM’s or develop them in early childhood, and they usually manifest by the time the person is in their forties or sooner. I am 78 and mine was discovered about five years ago after suffering a loud swooshing noise inside my head and frequent and severe headaches for two years.

Dewdo from the other Washington

That’s a tough life you led. thanks for fight ing for our country. i’m glad the VA is picking up the tab it’s hard when you’re young and in a country that insurance for someone like me costs 750 dollars. i couldn’t afford it so i’ve kinda abandoned persuing treatment since it’s not affordable and there really aren’t any options for me either. In hindsight i’ve had symptoms i can remember from my avm since i was in my teens. like the whooshing sounds and light sensitivity speech paralysis and other stuff. just never stopped going to worry about it. my Docs including Dr. Robert Spetzler and Dr. William Cauldwell believe most avms and davfs are congenital and that mine is fur shore. Unfortunatly mine is somewhat untreatable beacause of its location and size. i can’t have any embolizations or gamma knife treatments and choppin is risky too because of it’s spatial relationship to eloquent brain tissue (motor and functional areas). i have however undergone some experimental imaging (Functional mri and angiograms) to see how my brain is naturally trying to relocate the neurological activity controlling my breathing, heart, and other funtional processes into different areas; or if it’s just usin those areas for help or somethin. we don’t know yet. i also am trying different foods and stuff that might combat the death of cappilary beds from scarring due to hypertension or somethin in the caps. idk just trying what i can when i can but still trying to stay normal. hope all is well. god bless

Yikes…on top of my prayer list…the reason I am on here…my husband and I both had a rare catastrophic illness and SURVIVED! Also, we are both Navy Brats! PS…my first cousin had a pulmonary AVM.