AVM Survivors Network

Just diagnosed with cephalamacia with/from infarct in right cerebellum

I had surgery on my right cerebellum Jan. 6, 1992. This was at University of Chicago Hospital, the Brain Center. Dr. Sean Mullen did the surgery.

I just had an MRI for headaches and the results show that I have cephalomacia with/from infarct.This showed up in the area of the previous surgery. I looked up the terms and it means brain softening due to an injury, stroke, or other event in the brain. Of course, I had the AVM from birth (congenital) and I know that there were several episodes of extremely excruciating headaches with hospitalization & outpatient treatment. They didn't know then that it was from an AVM leak. One spinal tap showed clear spinal fluid but high pressure, which they told me meant I either had a hemorrhage/leak or had a brain tumor. At that time there were few places that did MRIs, so I didn't follow up until symptoms Xmas 1991 & surgery Jan. 6, 1992.

My AVM was swollen & pressing on nerves at the brain stem, which caused facial stinging shooting pain and bottom lip numbness. That's why a CAT-scan, a brain angiogram, and MRI were ordered which detected my AVM. All options except surgery were out. Thankfully, it saved my life with no permanent damage though when I went back to work teaching at my college, my former students asked if I was ok, so I told them, "It wasn't in a cognitive area, so there is no dain bramage." They looked at me a little bit, then got it! We laughed--and life went on.

Okay. So what I want to know at this point, is this just scar tissue from the surgery? Or is it damage from the previous known leaks (before we even knew what I had. I mean, going back to teen years, my 20s and my 30s).

Or is this indicating I had a stroke??? Anybody familiar with cephalomacia/infarct?

Hi...very interest..

I looked up cephalomacia/infarct and this is what I came up:

Encephalomalacia: A softness or degeneration of brain tissue, as caused by impairment of the blood supply; softening of the brain.
Although it is spelled differently, it seems to be the exact condition you mentioned.

Before MRI's, Cat Scans, angiograms, perhaps our brain AVM bleeds where just called Stroke. We are in the early stages of AVM surgeries, treatments, etc. Therefore, I wonder what other side effects will be discovered over the years.

It would be wonderful if you keep us informed on your progress!

an Infarct is brain tissue that isn't getting proper blood flow and oxygen. It could be basically mushy brain tissue that can cause the AVM to get worse. My boyfriend's 8 year old daughter had a brain bleed in June from an AVM that also had an infarct in her Cerebellum. She had major head aches, vomiting, blurred vision, and a hemotoma that the neurosurgeon said needed to absorb into her brain before surgery. They waited six weeks between Doctor's appointments. The night before she was to have another MRI and angiogram, she had a massive stroke and perished in the night. After this happned, I did major research to find out more about what was going on in her brain because the neurologist said that it was caught early and her symptoms were improving. Her infarct actually created a kind of crevice that the hematoma was caught in and was not absorbing at all. The night before she passed away, she had a tantrum and her blood pressure probably increased considerably and is what caused the re-bleed, but it was too late. I would demand surgery as soon as possible. Pay attention to your symptoms and the Cerebellum is a very dangerous area of the brain because it is not affecting your cognition and it is harder to tell if you are having stroke symptoms. Please make sure you get help and take care of yourself.

look up Brain Aneurysm/AVM Support Group sponsored by the Joe Neikro foundation on Facebook. they are a wealth of knowledge and support for anyone in your situation. If you do not have a facebook page then you should make one. there are many people and groups that are going through what you are going through and can give great advice.

I had the spelling wrong. Yours is correct. I have had balance problems in low light. I tend to fall over, usually towards the left. (AVM in rt. cerebellum.) I have read conflicting things on Net: it's just scar tissue; it's from a stroke, etc. I have appt. to see a neurologist--in April! So I wonder if my PCP looked at results as indicating "damage" caused from how the AVM was removed and bleeds blocked off. I thought the surgeon said that he "rerouted" the blood flow, so I am surprised that this is showing up now, except if it is from scar tissue.

I don't know how others are with their bodies and development of scar tissue after surgery, but mine seems to be a bit aggressive at it. I had a precancerous skin thing removed and the scar tissue is much larger and noticeable than original spot of suspicious nature. Had a tubal and years later, developed adhesions from scar tissue adhering to other places inside. I know I should just wait for neurologist to answer questions & hopefully put my mind at rest, but it is hard to not worry, given I have had two brain surgeries for two different kinds of problems: brain tumor (hole on optic nerve, with development of a pseudo glioma by age 3, causing left eye blindness, sorta' "death" of the eye & enucleation) and AVM. Seems when my brain was forming, there really were some glitches.

Thanks for your reply! I think anytime there is a bleed in the brain, it is called either from an aneurism or an AVM, unless by an injury--i.e., it's a "stroke"???

I was told that my AVM was "removed" and that I am "cured". Of course, at the time, I was just glad to be alive and intact without the darn thing blowing before or during the surgery. I was never told to expect any "aftereffects" later from the surgery or from having had an AVM with some "minor" leaks over the years before getting the surgery.

I am so sorry to hear about your boyfriend's daughter. You are exactly right that the cerebellum can be quite tricky in whether it present any symptoms. After the AVM surgery and I was told I was cured, I never thought about stroke and whether I might ever have one. Of course, I know the hazards of high blood pressure. I don't smoke ("except" 2nd hand!), don't drink, or do illicit drugs. But I am 61, be 62 in May, so know it's a real hazard as we age. Just wasn't expecting to ever have problems from my previous AVM again!

Thanks so much for your quick reply. I do pay attention to what goes on with my body, and will see neurologist in April.


Good luck to you and your AVM future.

Try to look for my AVM story (strokes w/brain surgeries), because I hope it will give YOU lots of hope! What I went thru and how far I have come, I want to spread the world that the 'STRENGTH FROM WITHIN' can make all the difference in recovery. What I learned from all my medical journey, I KNOW I AM HEAR TO HELP OTHERS!!

Good luck to your future!


Good to hear you're doing well.

I think it's likely that the encephalomalacia and infarct are normal results of the surgery. Encephalomalacia is softening of brain tissue that can result from a stroke but can also result from surgical trauma. The infarct is an area of tissue that has died as a result of inadequate blood flow. So I think in your case, even though both of these things can result from a stroke, they are also often normal results from surgery.

I actually asked my neurosurgeon about encephalomalacia at my last visit, and he said there's pretty much always a little from surgery (I have a little), and it's not necessarily something to worry about.

I might be wrong, and I don't know the specifics of your case, so ask your doctor about these things (better safe than sorry). From what I understand though I don't think that they're any cause for concern. Take care.

OK, update as of 2/5/14:
I have the radiology report from the MRI. Talk about medical gobble-de-gook! Anyway, it says “There is a focal region of mild to moderately extensive prolonged T1 and T2 involving the right cerebellar hemisphere inferolaterally as well as asymmetric prominence of the extra-axial CSF space in the posterior fossa… There are scattered subcortical and periventricular white matter punctate foci of prolonged T2, of a mild severity…There is a small to moderate in size venous angioma in the periventricular white matter porteriorly on the left… Chronic findings including a region of chronic encephalomalacia in the right cerebellar hemisphere as well as asymmetric atrophy in the posterior fossa.”

OK. I looked up most of the words except and, in, the, and a. Am I correct in thinking this means I have “cysts” or tumors or lesions in the indicated places, and that my cerebellum has deteriorated since the AVM surgery, whether independently or as a result? There are many conditions which are possibilities in understanding these results, almost all of them very, very bad. The cerebellum test (my finger to Dr.'s finger to my nose, back and forth, which showed left finger, everything ok. Rt. finger, way off, slow, and not too accurate.

Now, the left side venous angioma showed up in 2011, tho’ they never told me. It is NEW and did not show up in any MRIs or angiogram when I was being seem for the AVM. Can they form later in life? I thought they were congenital! Also, I read that latest thinking on Cerebellum functions include learning, motor skills/and signaling, balance, & coordination. I wasn’t aware that OTHER learning skills, including speech/language get signaled from the cereb. also. (Is this correct?)

This not knowing exactly what stuff means is very frustrating. Am waiting for appt. with neurosurgeon in Little Rock (They have to call to tell me when it is. I will keep you informed.

Did you ever find out what it means? My ct scan shows I have cystic encephalomalacia and am concerned about its meaning. No one ever posted on my question.