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Encephalomalacia and Gliosis
I had a craniotomy 5 months ago to remove a large frontal lobe meningioma. I recently had an MRI and the report included encephalomalacia and gliosis among the findings. I read a few internet articles and found these conditions to be a softening and scarring of brain tissue that can occur from TBI, infection, surgery or even drug abuse. I’m starting IMRT soon and am concerned about the effects of 60 Gray of radiation going into an already injured area. I spoke with the radiation oncologist who said that in her experience it was unusual to NOT encounter these conditions after surgery. This was a little bit comforting but I still postponed the start of treatment by a week to get comments from the neurosurgeon. Still waiting for neurosurgeon response. Does anyone else here have this condition and how has it affected you?
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I had a very large noncancerous meningioma (5cmx6cm) removed in January this year.
I can totally relate to what you're saying. The MRI's showed for me the encephalomalacia and gliosis, too. It sounds pretty scary and it is, to find out that part of your brain is now soft and dead, you get all sorts of side effects after the major surgery and when you tell your neurosurgeon, the response is , " we all have to die from something". When I asked him is all of these side effects will ever go away he said "probably not, but you're a rock star, you are here". I had 3 months after the surgery double vision, vertically stacked, ambliopia, I was driving and doing everything with one eye at-a-time for almost 3 months after which the ambliopia corrected. I have a lot of numbness in my mouth, palate, tongue, both hands. When I wrote my neurosurgeon about my ambliopia he was" come and let me see you". BTW the hospital where I had my surgery is 3 hours away from my house. So no, I couldn't drive with double vision. Fortunately that ended and I just saw my neurosurgeon 2 days ago when I told you what he said. So yeah, some doctors are very strange, but I am grateful he was able to remove my giant tumor and give me a chance to live again. You take care!
Your tumor was the same size as my big boy. Was it near the optic nerve hence the vision problems? I got an eventual reply from the neurosurgeon who confirmed that encephelamalacia is nearly always present after brain surgery. It doesn’t seem to have affected me so far. Radiation treatments were a breeze with few side effects. I hope your recovery is going well. Take care.
Did your meningioma infiltrate the skull bone?
@bfschemikerin
I don’t know if it actually infiltrated the bone, but the surgeon noted that there was some tumor stuck to it. A PA removed the tumor bits with a dremel-like tool while the main tumor was being removed.
@kdog1957 I am happy for you that they were able to preserve your bone.
Did you get a molecular diagnosis of your tumor tissue that was removed? That could be an indicator if a radiation treatment is immediately required or if it is better to observe for a while, especially if there are signs of encephalomalacia and gliosis. I would follow the advise of your neurosurgeon. They are usually more conservative when it comes to radiation treatment.
@bfschemikerin
My neurosurgeon was in favor of radiation treatment from the beginning as the meningioma was WHO grade 2 atypical. I was the one who was initially reluctant. I got second and third opinions in favor of treatment.
I am in a very similar situation (location, size and type II) but I don't have any indication of encephalomalacia and gliosis. I have voiced from the beginning my reluctance to an adjuvant radiation treatment of the whole resection area. With this size of tumor it is a rather large field that gets radiated. I am worried about the damage of the white matter of the underlying brain resulting in cognitive problems down the road. 60 Gray in your case sounds very high. What kind of radiation does your neurosurgeon suggest? Did you have a complete resection or was there any residual tumor tissue left? How do you feel now after the surgery?
I have learned from the medical literature that meningioma type II can come in all kind of variations. It depends what kind of mutation(s) there is (are) and on the proliferation rate (Ki-67) which is an indicator for the aggressiveness. Your meningioma type II might be very different than mine. Since I don't have any symptoms and want to keep working, my treatment team has decided for the "wait and see" approach with regular scans. I have decided that I will only have a radiation treatment of regions where the tumor grows again. Statement of my radiooncologist " it looks bad on paper, but you have a better quality of life".
Just if you don't know - in you pathology report you should be able to find your Ki-67 and the molecular diagnosis (mutations) of your tumor tissue.
The pathology report indicated Ki-67 and mutations were in the low to mid range for type 2. There was also brain invasion. I weathered the surgery well although I had a long hospital stay. I did a 15 mile bike ride a month after surgery and a 100 mile ride 4 months after surgery. I feel normal except for the scalp irregularities from the incision. I did receive 60 grays of IMRT in 30 fractions, biked to all the treatments. I had no side effects except for a little hair loss that is growing back. The potential for late term cognitive decline was and is a concern. But right now my brain doesn’t seem any worse than it was.