I have posted the below discussion about a month and half ago. My father has had his follow up appointment with Dr. Liebman and will go for an angiogram on the 21st of this month. Since the last discussion, my dad now has numbness around his right eye. The numbess has seemed to migrate from the right side of face near his ear to his right eye. Has anyone experienced this?
Also, my dad would like to know if anyone’s AVM grew back after being told that the AVM was obliterated? He had two embos in early 2008, and also a craniotomy 7 months ago (in June 2008). Feedback would very much be appreciated!
Hope you all had a great new year!
My dad has gotten embollizations two times in early 2008 and a craniotomy on June 9, 2008 on his right side of the head, behind his right ear. It has been six months now with headaches/tingling feeling here and there. We were told that this was part of the healing process. Now in the last month, he has been experiencing numbness on the right side of his face, near and in his right ear, and also, the pulsating of his heartbeat in his ear. But no numbness anywhere else on his body. (we had originally thought of stroke but stroke symptoms occur on the whole side of his body and he doesn’t have that). Has anyone experienced this kind of pain? He has a check up appointment Dec 8th with Dr.Liebman in now New Jersey, but until then, we would like to know if anyone has experience this before. Much feedback would be appreciated!
Thank you Irene. We aren’t aware of AVMs growing back either.
Irene Carnahan said:
My AVM was surgically removed after it bled, in the year 1959. It never grew back, but I don’t know if they do. I would be surprised if it was true, Someone should answer you here,
yes, I had everything you listed. The right side of my head still has numb spots, tingling (more at some times than others)(2 1/2 yrs post) My right eye droops at times (seems to be more often at fatigue) I often feel like a golf ball is right under my skin above my right eye causing pressure. It also can feel like worms or movement right under the skin --have seen the vein buldge there too. When I have head pain it always runs the same track from my eye up over my head (staying on the right side) down to the back of my head by my neck.
AVM’s don’t grow back, but was told that if they didn’t get the entire thing during surgery, it can retangle in the spot that is left. Good news–once it is gone–it is gone.
I am more concerned with aneurysms forming. I have new blurred vision and intense pain etc that has started again. I had 2 aneurysms that formed around mine that were clipped. Those can form at any time. The whole recovery thing is so strange and there are always strange feelings etc that I/we question.
The pain and numbness could also be a unique form of a migraine (stroke like one–ca’t recall the name) Does it seem to come in episodes?
Samantha! Wow. It sounds like you went through a lot. How did your doctor determine that you had aneurysms? Were there any signs/symptoms prior to clipping?
Samantha said:
yes, I had everything you listed. The right side of my head still has numb spots, tingling (more at some times than others)(2 1/2 yrs post) My right eye droops at times (seems to be more often at fatigue) I often feel like a golf ball is right under my skin above my right eye causing pressure. It also can feel like worms or movement right under the skin --have seen the vein buldge there too. When I have head pain it always runs the same track from my eye up over my head (staying on the right side) down to the back of my head by my neck.
AVM’s don’t grow back, but was told that if they didn’t get the entire thing during surgery, it can retangle in the spot that is left. Good news–once it is gone–it is gone. I am more concerned with aneurysms forming. I have new blurred vision and intense pain etc that has started again. I had 2 aneurysms that formed around mine that were clipped. Those can form at any time. The whole recovery thing is so strange and there are always strange feelings etc that I/we question. The pain and numbness could also be a unique form of a migraine (stroke like one–ca’t recall the name) Does it seem to come in episodes?
Yes, I had a craniotomy in sept 2013 and an AVM removed after it bled. The angiogram in April 2014 showed it has grown back. I am having another craniotomy in a few weeks.
Hi Ramon this is the first time i have ever heard that an AVM can regrow.When the operation was complete did they advise you that it had been removed completely ?
I had my surgery in 2011 and follow up Angio and CT have failed to show any regrowth etc...i have always been told that it can be more common in children up to 9/10 yrs old. Did the Dr's advise you that it was a regrowth or it was maybe feeders that they may have missed during surgery?
Keep us posted and God bless, you are in my prayers.
They did not advise me of this on the first surgery. But, now I have been told by two different Neurosurgeons that it does happen, and there is a chance my AVM could grow back again. I was told when they removed the AVM they try to cut back as far as possible to remove all cells of the AVM, but the more they cut back, the more damage can occur to your body part, (in my case it was my right hand and arm). So it is a judgement call on how much to remove. I was also told some blood vessels are so very very small it is easy to miss and they can grow back in place of the AVM becoming a new AVM.