I had Gamma Knife back in 1995. They said that by 1999-2000 the AVM was completely obliterated. But now I have one in my left retina. Could it have rooted and re-grown???? I mean these are congenital; or so they say. Anyone?
Also, did any get Epilepsy or MS after surgery?
God Bless All,
Yes, unfortunately they can recur. I’m not sure if “grow back” is totally accurate but for the most part it’s pretty much what we would all call it. The thing is that if ANY AVM is left, it could become active again. It can go through angiogenesis and recoup itself. I’m not sure where your original one was but it’s also possible that you always had more than one AVM but only one area was active and really visible. There are members on the board with AVM’s in multiple locations. And us extremity kids know that there can often be an AVM someplace causing no issues with no signs and then totally start growing and becoming a problem seemingly out of the blue.
What did your docs tell you about recurrence?
Thanks for responding. I appreciate it. Right now, I am seeing a retina specialist. He has never seen an AVM in the retina before, so he was kind of surprised. He consulted with a Neurologist and they decided to treat it right away to try and stop it progression with radiation treatment. They are treating it as though I have age related macular disease. I am 47. They have been giving me weekly injections. My Neurosurgeon no longer works at USCF, so I think I will call the Mayo Clinic in Scottsdale. The one in the right parietal lobe is obliterated, so I don’t know what to think with epilepsy and now MS to boot. Keep the faith, keep the faith, keep the faith. i keep teling myself this…
God Bless you and thanks again.
Well it’s good that your retina specialist consulted with someone more experienced with AVM’s. Was your neurologist at UCSF? They have a good team there and a Vascular Anomaly Clinic with a multidiscipline team to cover all bases. I have been treated there previously and know other members have as well. Anyplace you ck in to consult with that has AVM experts will definately be a good place to start.
As far as the opilepsy and MS- is that just a result of damaged tissue from the GK? I don’t know much about the area’s of the brain or where those conditions relate to in relation to your pareital lobe. I’m a “no brainer” so I’m not as familiar with that aspect as many others on the board!
I do wish you luck with this radiation treatment and hope that it won’t last too many weeks!
This post scares me a little My dr keeps telling me i will never have to worry about this avm again (once its gone). But after reading this and what Shalon has posted kind of confirms my worries and I’m glad to know it can happen. Instead of being blindsided by one again. Thank you for posting this and thank you Shalon for confirming my fear. I would rather know it could regrown some where then have a bleed or something crazy! I love this site
Best of luck to you girls as always love and hugs from NY
Andrea, I too was surprisedwith what Shalon posted! I figure though, that I probably have had the one they just found in my retina, since birth. Shalon, thank you for everything. I did not have a Neurologist at UCSF. I only had the Neurosurgeon. I am looking into all of my options. I know that I cannot walk around with this AVM in my eye. My love to all. God bless you. Loretta