Encephalomalacia, anyone?

I had brain surgery because of a brain bleed. In about 2015, I was just recently diagnosed with Deep to the craniotomy fairly large area of macrocystic encephalomalacia. With gliosis and siderosis. (Spelling). First I’ve heard of any of it. I’ve had problems with bladder and bowel which I read one or more of these have that symptom. I also found out I had another stroke, that I knew nothing about. One is rare only one out of a million people get it. Why couldn’t I have been one out of a million people that won the lottery instead. But yes it took a while to find out about all these other problems that I can’t say or spell. I do have some symptoms waiting to see the neurologist to see if it’s really bad or not. I take 28 pills a day now hope they don’t give me more. Take care and good luck, or better yet God bless.

Hi. Im in my mid 50s , I have had 3 TBİs , the first I fractured my skull from the top to the bottom left side . Closed fracture. I was in a coma for 3 days until the brain surgeons were prepping me for surgery ( there was intense swelling they wanted to release, I woke up and never had surgery. The second was in my mod 20s I fell on some wet leaves , went to work for about a week, then was so dizzy, blacking out. Made an appointment saw the Dr . She looked in my ears, there was blood behind them, she said dont take aspirin, drink alcohol, if you haven’t gone into a coma by now you probably won’t… then my late 40s İ again fell on ice and hit a parking meter.
Since then, I have had such severe difficulty, reading, severe migraines behind my left eye, nausea, vomiting with headache which can last 3 to 4 days sometimes.
I have limited mobility due to 2 back surgeries, staying in bed with a migraine just makes back worse.
I also have cervical dystonia. They diagnosed this about 7 years ago.
I have been having difficulty with my neurology . I started going to this practice 3 years ago. I moved to a different state so all mew drs. Doc 1 was great. I really think he cared , tried to help me . ( I get Botox in my head neck and jaw every 3 months with them. To treat the cervical dystonia and migraine, and TMJ .
He left the practice. Then I had an appointment with the practice owner who said he can’t help me. Really odd appointment. He got a fill im Dr for injections ( Botox) another neurologist, who said he would be my treating neurologist.the first appointment went ok. He spent time ( I don’t think he was expecting to do more than injections) with me. Ordered a brain and neck mri as my last on was 2017 and I was supposed to be followed closely, I was hospitalized back then, had every kind of scan , was there about a week. I couldn’t stand without severe pain and dizziness. I saw this neurologist 2 times. The first he said I had parkensons , the second he said I had a stroke but not to worry about it it was in the past. He didn’t spend time as it was a Botox appointment, he spent a little time but not much. I couldn’t get any questions answered. I was still dealing with the parkensons diagnosis when he said I had a stroke I was stunned. The next appointment I had questions written out, even if he couldn’t answer because of time , he could read them and answer in my chart . My PCP helped me. Then for my 3d appointment the office called to reschedule, the Dr had ankle surgery and wasnt healing as quickly as expected. They put it off 6 weeks. Then they called and said they had to cancel the appointment “indefinitely “ I was lost. I had a caseworker come into my care team around that time. She said that was BS and got me an appointment fairly quickly with a covering neurologist. It was 3 months from when I was supposed to get these shots, that they had told me back in Boston I would need every 3 months for the rest of my life. I had been in agony. PT couldn’t help much , I still went. I asked the covering neurologist for an updated PT script as this was to the point I couldn’t stand or sit after 2-3 pm due to the literal weight of my head. The pain was severe and still is. She added another diagnosis cervical spondylitis ( neck sprain) . I found this out from PT not from her.
From my neck and head mris I knew inad disks out in my neck, some growing up through the one above but none pinching a nerve. My brain mri said I had interval progression of mild cerebral atrophy mild chronic subcritical encephalancia the damage on the lateral aspect of my left temporal lobe.
Now since I don’t seem to have a neuro following me, I’m so confused. Google AI has been my Dr . I live in maine and neurologists are hard to get. My caseworkers grant got cut in half , I don’t actually know if I’ll be seeing her again which is awful. She was going to go with me to my next neuro appointment. I’m afraid of losing this practice only because I don’t know any other s taking new patients. I don’t even know what is happening. Are they just throwing diagnosis at the wall and seeing what fits? I don’t know if the one with ankle surgery is coming back or not. When they made my3 months follow up they usually schedule for the year, this time they said they didn’t know if the Dr was coming back and made just one appointment. I’m confused. I’m not sure if im even seeing the right kind of Dr. I know neurologists are a strange breed, I have had many over the years. I’ve never had this confusion over what is happening with me. The additional diagnosis every time I go in.
If anyone reading this has any advice or experience with a be office with all these added diagnoses, not much communication with me, just in their notes taken. I wonder if I am being taken on a ride that ends who knows where. Do I send my scans to an out of state Dr? How can I continue with having difficulty holding my head up, come mid afternoon? I don’t even understand if this is coming from my head or neck. Or both. If the cervical dystonia that came on after my last head injury is due to that. Everything including the cervical dystonia is neurological. The spine changes in my neck aren’t. Or are they? I feel lost on medical limbo. Any help with what someone else going through someone similar? If so please let me know how you are dealing with it. Thank you…. Especially of you read this saha.

Im in a confusing state with my neurological office. I also have cervical dystonia that causes muscle spasms and they have gotten far more severe over the last 9 months. I have interval progression of mild cerebral atrophy and subcritical encephalanacia of the lateral aspect of left temporal lobe. Trying to get any answers from the neurologists have been horrid. Im to the point I can’t hold my head up more than a few minutes after 2-3 pm . I HAVE to lay down at that point. I’m not even sure of the pain is from my head or my neck. I have been disabled since 2017 and my 3d TBI. In my mid 50s at this point. I don’t see a future anymore.
Pretty scary.!
I hope you get the answers soon! These terms and diagnosis that keep getting thrown at me . I don’t understand.
I wish you better luck going forward with your neuro team than I have had.
Best to you.

Hello.
Hope everyone is doing well.

In 2017, I had a craniotomy to remove a tumor in my left middle cranial fossa that measured slightly more than an inch. Encephalomalacia first appeared in my follow-up MRI report two years later, but my neuro never mentioned it or attempted to discuss it during office visit. Another MRI in 2021 revealed "mild encephalomalacia in the anterior left temporal lobe at the resection site." Neuro made no mention of it.

On my third follow-up MRI scan last year, the report revealed again that I have "mild encephalomalacia...Minimal gliosis involves the lower left temporal lobe at the pterion."

The question is, should I be concerned? Since he hasn't mentioned it to me or brought it up at all, Neuro doesn't seem concerned about it.

Thanks for reading.
Best,

Hi there. I was diagnosed with chronic encephamalacia due to brain surgery and radiation therapy. The doctors told me that it was just scarring for over 20 years yet I knew my symptoms were progressing. I finally read my MRI scans a couple of years ago and saw the word chronic so I knew it was something serious. Then I uploaded my scans to ChatGPT and it gave me an awesome way to slow down the progression. It’s a complete diet change consisting of all anti-inflammatory foods (blueberries, turmeric with black pepper, ginger, etc…). So it generated a recipe for a smoothie I drink daily. And at night I drink pure cacao (great for stem cells) mixed with Chia seeds and almond milk which has helped tremendously. Since yours is mild, I’d start with these neuroprotective foods right away. Mine has become chronic so I’m currently trying to get into a clinical trial somewhere. Anyhow, I hope this info helps and wish you well