My AVM is in the pons of the brain. I have been told that due to the location, this may not be treatable. Is this true?
Hi ktgreene. I have a CVM located in the pons area. I had a follow-up with my neurosurgeon on 9/15. Because it is so deep in the pons area, they are concerned about cutting deep into the good brain mass. They can cut through it, but he explained I could end up with a permanent trachea and feeding tube, from where they would have to cut through the good brain mass in the pons area. Now, if the CVM was protruding out, or even closer to the outside area of the pons, then they could do surgery. But the risks of mine were just to great than any positive outcome from the surgery. So, I’m left treating the symptoms of the CVM, rather than doing the surgery. It’s frustrating, and scary all at the same time. I pray you get more answers from your neurosurgeon.
I did a search for you…
http://www.avmsurvivors.org/main/search/search?q=Pons+of+the+brain
Praying for you!
Hi – not quite sure what the pons of the brain is – but my AVM was located around my brainstem and it was inoperable, I ended up going to Stanford University in California and I had Stereotactic Radiosurgery. It worked – I am AVM free!
Check this out about PONS - http://faculty.ucc.edu/biology-potter/the_brain/sld017.htm
Mine was the cerebellum http://faculty.ucc.edu/biology-potter/the_brain/sld015.htm and the bleed around it, which made it impossible for normal surgery. GKR is often the only route…
Hi kt,
CVM is an acronym for cavernous malformation. There are several acronyms for these vascular malformations & it get’s confusing & not a ‘silly’ question at all!
http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork
Hope your appt. went well.
Patti
BIG CONGRATS to you, Diane for being AVM-free - YAY!!!
actually it is possible to do a surgery called gamma knive surgery.. you may want to ask the doctor about this procedure and the risks