Encephalomalacia, anyone?

Yes! I am so grateful to communicate with you! I had an aneurysm clamped off in my left temporal lobe about 20 years ago. I had numerous CAT scans during the years following seizures in which I fell and injured myself. Encephalomacea never showed up in any of them. Until the one I had done following an assault October 13th 2023. This finding was never brought to my attention by my neurologist nor my primary care physician.
In fact, I came across this information on my own while filling out forms for Social security disability. I have an appointment for tomorrow morning with my neurologist to discuss this development. I have had repetitive seizures, developed "excessive daytime sleepiness" which a polysomnography and sleep study diagnosed my condition as idiopathic hypersomnia. Most recently, I developed sleep disturbances that appeared to be Parasomnias. I have endured headaches and most recently sudden onset severe headaches, vertigo, diminished coordination, and my vision, at 50, began to deteriorate rapidly. After never having worn glasses, the last 2 years, my vision has become increasingly poorer, and continues to do so. I have developed behaviors that are NOT typical of my past behaviors. I have developed moods that don't seem to be my own. I have also developed severe symptoms of ADHD, WHICH I ALSO NEVER HAD BEFORE.
Short and long term Memory loss has significantly increased over the years following my surgery. I also suffer from confusion, and dizziness. I realized just today that these conditions, which were potentially diagnosed as other conditions, all symptomotology seemed to fit encephalomalacia. I am devastated, as I understand this to be a non-treatable, non-curable, and eventually terminal.

Had brain surgery 2010; just got diagnosed with having stable encephalomalacia for the first time. Have no idea what it means for me.

Has anyone experienced seizure activity (blank stare, loss of consciousness, seizure tremors and rigid abdominal muscles) and been diagnosed with encephalomalacia?

I had an awake craniotomy in August 2019 to resect a benign tumor, and encephalomalacia did not initially present on immediate follow-up MRIs. However, it was evident on my two-year follow-up MRI in 2021. My Mayo neurosurgeon did not think it was any cause for concern but rather an expected consequence of surgery.
I have several comorbidities so it's difficult for me to say whether it has caused any issues or not. But I'd love to hear others' experiences. I have another follow-up MRI in a few months and am wildly curious to see if it has spread to other areas of my brain.

This was my last mri after 6 brain surgeries icu 9 months drug induced coma for a few months... it's not the encephalmalicia, it's the residual effects that we have to deal with, I use we because it's a family and friend kind of thing maybe some will understand.

1^MRI BRAIN/BRAIN STEM W&W/O Loc: MRI
Service: Unknown

(Case 4683 COMPLETE) MRI BRAIN/BRAIN STEM W&W/O CONT (MRI Detailed) CPT:70553
Contrast Media : Gadolinium
Proc Modifiers : NO MODIFIER
Reason for Study: Possible seizure

Clinical History:
Patient's Weight: 190 lb [86.4 kg] (10/09/2018 13:05)
Patient's Height: 71 in [180.3 cm] (10/09/2018 13:05)

Reason: 59 y/o with a new onset of right sided spasms vs
seizures. There is right parietal myelomalacia and an aneurysmal
clip in the right parasellar region on head CT.

Able to lie still minimum of 50 minutes? Yes

Has the patient ever had surgery or any type of medical
procedure that
left an implant or medical device in or on the body? (ex:
aneurysm
clips, IVC filter, cochlear implant, joint replacement, ORIF,
pacemaker, etc)
Yes

If so, when was the surgery? 1996
What type of implant? aneurysmal clip
(These are extremely important. The study CANNOT be scheduled
without
providing this information)

Has the patient ever worked in an occupation or been exposed to
the
possibility of metal shavings imbedding in the eyes? (ex:
machinist,
metal workers, etc.) No

If so, please order an orbit series when ordering the MRI to
rule out FB
to the eyes.

Is the patient claustrophobic? No
Is patients weight over 300 lbs? No

Does the patient have any retained shrapnel or metallic FB?
No

If so, please order routine studies of the affected area to
evaluate the
FB.

Does the patient have a history of head injury, concussion,
traumatic brain injury (TBI), serious motor vehicle accident, or
been exposed to blasts? No

Report Status: Verified Date Reported: OCT 26, 2018
Date Verified: OCT 26, 2018
Verifier E-Sig:/ES/Mark Conneely, MD

Report:
MRI BRAIN/BRAIN STEM W&W/O CONT

Date: 10/26/18 09:40:00

Indication: 59-year-old male with history of possible seizure.

Comparison: MRI orbits from 10/02/13 and MRI brain 11/14/12. Also
CT head from 10/09/18.

Technique: The following imaging sequences were obtained: 3-D
spoiled gradient echo images with multiplanar reconstructions,
axial T2 FSE fat sat, diffusion weighted, FLAIR, and
susceptibility weighted images, and coronal T2 FSE.

Findings:

Postoperative changes are redemonstrated compatible with right
convexity craniotomy. An extradural fluid collection is again
seen deep to the craniotomy flap measuring up to 8 mm in maximum
thickness, stable,

Extensive encephalomalacia of the perisylvian right frontal
temporal and parietal lobes is again seen with gyriform
hemosiderin staining and scattered foci of old low products,
stable.

There is lack of the expected flow void in the right internal
carotid artery compatible with occlusion. Focal metallic
artifact centered in in the right parasellar region correlates
with an embolic coil seen on comparison CT studies.

There is persistent dural thickening and enhancement diffusely,
more pronounced than the right than on the left, likely
representing reactive changes from surgery.

There is diffuse signal abnormality throughout the
periventricular white matter and patchy areas of abnormal signal
are present on T2 weighted images throughout the central and
subcortical white matter of both cerebral hemispheres, compatible
with chronic small vessel ischemic disease without significant
interval change.

There is mild mucosal thickening in the ethmoid air cells and
right maxillary sinus. No air-fluid levels are present in the
paranasal sinuses.

Impression:

Stable postsurgical changes, right hemispheric encephalomalacia,
moderate chronic small vessel ischemic disease as detailed above.

Stable extradural fluid collection deep to the right hemispheric
craniotomy flap.

Mild chronic sinusitis.

Primary Diagnostic Code: MINOR ABNORMALITY

Primary Interpreting Staff:
Mark Conneely, MD, Radiologist (Verifier)
/MC

** END REPORT Dec 16, 2019 10:01:18 am **

I had a lemon size meningioma in the frontal lobe in 2008. I just found out that I now have encephalomacia also. I've had quite a few MRI'S since2008 and was never told. I only found out after suffering continuous unexplained symptoms I did my own research. I looked up my symptoms in relation to my craniotomy and resection. I kept coming back to the same diagnosis, encephalomacia! I researched all my past records and there it was that terrifying word. I went to a different neurologist and I'm waiting for my appt in November to get answers!
You probably have a lot of info by now. I saw that you posted in 2023. I hope your questions were answered! I'm so sorry for the long text!

Hi. I'm Lois. I'm 70. I had brain surgery in 1993 and i now have frontotemporal encephalomalacia. I was put on gabapentin to deal with spasms so I'm uncertain if my symptoms are from the gab or from the enceph. Have you had regular MRIs or CTs? I haven’t had either since 2018. Should I be getting one each year??