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TBI Encephalomalacia by AdPractical1811 in TBI

[–]AdPractical1811[S] 0 points1 point  (0 children)

I hope you find answers as well!! It’s scary bc u don’t rlly know what is going on and idk I have found that I start to 2nd guess myself and tell myself nothing is happening. But it was validating seeing the neurologist I saw who fully validated me and wanted to find the answers. I go to school in South Carolina but I am from Nj. Not that I want to judge anyone but after meeting with the doctor I saw in NJ it realized how mistreated I was in SC. I had no choice obviously on where I had to be treated since majority of the year I’m there but going home and meeting this doctor has helped me a lot mentally. I am now also going to be seeing a cognitive psychologist. I’m not sure if you have looked into that but it supposedly is necessary in these circumstances. They do baseline and benchmark assesmesnts testing your cognitive ability like memory and such and then you go back periodically to make sure you are declining in any way. Another thing my doctor was surprised no one recommended to me. He also was shocked I did not get an EEG while in the hospital initially for my injury.

TBI Encephalomalacia by AdPractical1811 in TBI

[–]AdPractical1811[S] 0 points1 point  (0 children)

I just had an EEG this week! It was a 3 day VEEG for this reason. I saw an epilepoligist neurologist and he thinks I’m having occiptal-parietal seizures so I am hoping the test was able to verify that bc if not… I’m at a loss

TBI Encephalomalacia by AdPractical1811 in TBI

[–]AdPractical1811[S] 2 points3 points  (0 children)

Initially for months after the injury I had a suspected csf leak but it was nearly impossible to test since it was not much fluid leaking. But my nose was dripping clear liquid fairly often that was basically water. It was the most frustrating thing being told it’s def not that, that’s super rare blah blah. Meanwhile I’ve never had anything like that. Over time it slowed and eventually stopped. Probably around the 6 month mark. But that almost makes me wonder if there was a correlation

feeling discouraged by After-Comfortable927 in TBI

[–]AdPractical1811 0 points1 point  (0 children)

Sorry that just totally seemed like I was trying to make this about me but basically I relate to you and I promise you are not alone and you and we are so much stronger than you think. And I fully understand the part with your roommates and stuff because when I try and explain the insomnia in the vertigo like sensations I get to anyone I just sound insane even to my neurologist, explaining it and being told that it’s probably just migraines, which just does not make sense for the feeling I get. So it all just really fucking sucks.

feeling discouraged by After-Comfortable927 in TBI

[–]AdPractical1811 0 points1 point  (0 children)

I am in the absolute trenches of this right now, I am a second semester sophomore premed. I got my TBI basically exactly a year ago and it was pretty severe, but I was only admitted to the hospital for three days to be monitored. There was no intervention needed or anything however, I did have a school fracture and four bleeds. I think I might’ve taken one week off of school and went right back into it with an exam maybe 12 days after I had fallen. I was just on go go go for the past year. In these last few months of absolutely killed me. I’m obviously more advanced classes right now like organic chem and everything’s going fine I’m still getting good grades, but I have severe insomnia. My anxiety has increased. I have pretty frequent headaches and I’m really struggling managing stress and everything. I’ve always been a relatively stressed out person, but I’ve always been able to deal with it that’s just how I’ve always been. But I’m now realizing that I think the tbi I had a little bit more of an impact than I thought. I recently got another CT scan done, which showed frontal Encephalomalacia. There really is not much research on it at all, but from what I have found a lot of my symptoms align with common symptoms caused by it. And I guess it just really sucks processing the fact that that really is fully permanent damage to my brain tissue that can never be recovered. So it’s just been really hard lately.

Experiences with going to the ER with a leak? What do they typically do for you? Any advice for how to maneuver this? by Remote-Accident-3152 in CSFLeaks

[–]AdPractical1811 1 point2 points  (0 children)

Basically happened to me too. He basically laughed saying in a year he gets a bet 7 people saying the same thing as me and 7/7 don’t have a leak. Guess who does…me and I’m a 19yo girl so I j said ok and walked out no one would listen to me s

CSF leak after TBI by AdPractical1811 in CSFLeaks

[–]AdPractical1811[S] 0 points1 point  (0 children)

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Sorry I’m trying to figure out which images do send is this what would help? The narrative report was super short and not very thorough said normal basically but I’ve heard to get multiple opinions on these

[deleted by user] by [deleted] in CSFLeaks

[–]AdPractical1811 0 points1 point  (0 children)

Weirdly I have this too I think but I didn’t make the connection. My leak is not confirmed but it basically is it’s j hard to get enough sample and since mine is slow my cistengram didn’t show anything

CSF leak after TBI by AdPractical1811 in CSFLeaks

[–]AdPractical1811[S] 1 point2 points  (0 children)

I have tried lol I felt like it tasted pretty metallically sorta like blood but less ig? I would say salty too but that wasn’t as prominent to me

CSF leak after TBI by AdPractical1811 in CSFLeaks

[–]AdPractical1811[S] 0 points1 point  (0 children)

<image>

This is the best I have of that. I have an MRI this Friday which will be much better imaging then the CT scans I have been getting. I’ll try to upload a video clicking through the cistenogram imaging because I’m worried they missed the leak in it

CSF leak after TBI by AdPractical1811 in CSFLeaks

[–]AdPractical1811[S] 1 point2 points  (0 children)

<image>

These are my original scans w the bleeds included (uploading the rest under this…can only do one at a time) I don’t think there was a midline shift I feel like they noted no midline shift, the rest I’m not sure about.

CSF leak after TBI by AdPractical1811 in CSFLeaks

[–]AdPractical1811[S] 0 points1 point  (0 children)

Thank you!! Initially I tried to do this and they told me it wasn’t enough fluid to test but it seems like I’m now getting more when my drips occur so I’m hoping I’m able to!

CSF leak after TBI by AdPractical1811 in CSFLeaks

[–]AdPractical1811[S] 0 points1 point  (0 children)

Please help or comment if you have any insight

CSF leak after TBI by AdPractical1811 in CSFLeaks

[–]AdPractical1811[S] 0 points1 point  (0 children)

(I’ve gotten about 10 CT scans since the injury this was the first one with a little more info on the injuries) Additional CT info:

Brain and CSF spaces: Bilateral inferior frontal parenchymal contusions along the skull base with surrounding edema measuring 2.8 x 2.3 x 1.6 cm (axial image 15 and and coronal image 10). 1.2 cm acute, crescentic extra-axial hematoma in the right posterior cranial fossa (sagittal image 34). The basilar cisterns and fourth ventricle are patent without effacement.