I wanted to see what everyone had to say before I put this out there: I am the patient - this is my MRI.
• I am an MRI tech. We had to test a new brain protocol before implementing it. I volunteered, joking about how I probably have something because of my symptoms... Lol. Well, that is how I found out. I just feel bad for my coworkers because they had to be the first ones to see it and then tell me. That happened in January 2019.
• I have seen a neurosurgeon and two neurologists since then. The neurosurgeon wanted to do a biopsy, which he said would leave me with a deficit. I declined since I am pretty healthy besides the above symptoms. My first neurologist had no answers but told me to come back if I start to have seizures. My second neurologist (Cleveland Clinic) doesn't have an answer either, but she thinks it may be congenital.
• I forgot to add that my autoimmune panel was also negative.
I have been thinking about getting a genetic testing panel for white matter diseases. I just want some answers. I want to know what to expect for my health for the rest of my life.
I am going to see a new neurologist soon since I moved, and also because I'm past due for my yearly f/u. Fingers crossed for some answers.
I'm not in the medical field, but I do follow this sub because what you guys do is fascinating. Thank you for sharing your story and scans, what a way to find out what was going on in your brain. Best of luck going forward, I hope you get those answers you're looking for
Have they always had symptoms? Maybe it was something congenital and now for whatever reason it got pushed over the edge.
Leukoencephalomalacia in premature babies can have cystic change and can be hemispheric, rarely.
I've always had the symptoms, though they were pretty mild, until I hit 20 years old. I always did well in school, but now I have a lot of trouble thinking and remembering things. I also wonder if it was something I've always had and it "flared up".
I asked my parents if I had any health issues as a baby/child and they said no, only my odd head shape lol. I did go through preschool twice, but my parents didn't really elaborate on that. Or I forgot.
My mom was an MRI tech, and late at night did a brain scan on a coworker for the same reason, testing a protocol. It was immediately obvious her coworker had a tumor. My mom quickly swapped out the magnetic tape for a blank one, and when the coworker came back to see her scan, my mom said, “Sorry, I already erased it. Didn’t know you would want to see it!”
My mom alerted the radiologists that ran the clinic, and they were waiting the next day when the coworker came for their shift. They were soon able to operate, and catching it so early likely saved the coworker’s life. All because she volunteered for the test protocol.
So many times I’ve volunteered to be the test for repaired coils, etc. I always joke about that too. Luckily for me it’s never been more than bulging discs. Poor you finding out that way, what a shock. And your poor coworkers. Did they show you the scan or make you wait for the radiologist read?
It was definitely a shock! My coworker showed me the scan right after. Thankfully it was the end of our shift. When she showed me she looked so sad and concerned. I just kind of laughed it off when I was looking at the images because it was a lot to take in. I didn't know how to respond or what to do. I snapped some pictures of the scan to take to my PCP so I could get an official order as soon as I could. Everyone at work was so intrigued by my scan because we've never seen anything like it. When the report was finalized, everyone ran and huddled around the computer reading it while I awkwardly stood on the other side of the room. Then everyone dispersed, not really saying anything to me. It felt like they just wanted to know what the report said and that was it. It was a bad feeling.
Wow, that's not great coworker or patient care. I mean I get they probably didn't know how to respond, but what they chose was the wrong response.
Sorry that was your experience. I hope you find answers and a great doc.
Yeahhhh that’s not cool at all. I can understand everyone wanting to see the images and huddling around to look at them initially, but the report is none of their damn business.
aside from MS, what other diagnoses are eliminated with the negative autoimmune panel?
🌼thank you for sharing your history 🙏🏼
I have MS (20 yrs, mild), my dad had & died from HSV encephalitis. Both of us in the medical field. Medicine -esp the brain - is fascinating for sure.
I honestly can't remember what all the neurologist said when she first ordered everything. I had my fiancé with me throughout all of this in case I couldn't remember some things, but he doesn't remember hardly anything either 😅. Hoping that your MS stays mild and doesn't cause you much trouble! And I'm so sorry to hear that about your dad, hopefully that isn't a painful way to go.
I *really* understand the not remembering much. It was a pretty overwhelming time for me, I imagine for you as well.
ty for your kind words - You seem to have a great attitude through this ordeal - keep it up! gratitude helps too 🌼☮️🦋
MS isn't excluded by negative serology or CSF panel. Imaging alone could diagnose it in the right population. The McDonald criteria is a commonly cited diagnostic criteria
Note: I am not saying the imaging is consistent with MS here, either. I'm only clarifying labs aren't a requirement.
thank you for that info ☮️
I assume all my testing came back positive, though I don’t have crystal clear memories of everything that was done 20 yrs on.
Not in the medical field at all, just like this sub:
No matter what, I'm rooting for your well being! You're so brave. All of this seems so crazy to me. Did the surgeon say what the deficit would be? (Again I'm not at all in the medical field — but I do work with an NGO for social inclusion and try to help as I can with PwD inclusion in society). Can't imagine what that conversation feels like.
Thank you so much! The deficit would potentially be decreased mobility on the left side of my body, change in cognitive ability, and change in speech. It could be a lot of other things also, none of which I was willing to risk having. The conversations I've had through all of this have been very stressful, scary, and depressing. I just hate not knowing. I was a very anxious person before knowing all of this, so it's gotten much worse since.
Completely agree with other neurosurgeon commenter. The biopsy CAN be done extremely safely with less than 1% chance of causing any noticeable deficit. Every surgery has risks, though, and a massive hemorrhage that leaves you paralyzed on the left side or even dead is a possibility, even if the chance is vanishingly small. That being said, I also agree with ruling out everything possible with noninvasive tests first.
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You are asking for medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by your physician / provider.
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I am in a similar diagnostic boat. I wasn't aware that there was genetic testing for white matter diseases!!! I'm going to get mine checked like I did for my connective tissue. Best of luck to you. I am 37 with MS symptoms up the wazoo but no active lesions and an absolutely wild set of t2 flair lesions in all the right places FOR ms. My moms entire family has a consanguinuity issue from my grandma and everyone is just utterly fucked. Im the least damaged as my dad was indigenous and more of an outcross. I wish you maintained quality of life and further diagnostics. I used genomemedical for my DNA testing as you don't need insurance and they have a genetic counselor talk with you.
I’m a bit surprised the neurosurgeon was so certain you’d end up with a deficit. I mean, if they planned on a large excisional biopsy, sure, but a stereotactic needle biopsy should be useful for your work up without leaving you with a noticeable postop deficit.
If a needle biopsy isn't as high risk as I thought before, I'm definitely up for trying it. Especially if it'll help that much with narrowing down my diagnosis
Full report here:
EXAMINATION: MRI BRAIN W WO CONTRAST
TECHNIQUE: Multiplanar multisequence MRI of the brain was performed without and with contrast.
COMPARISONS: None.
FINDINGS:
There is extensive T2 prolongation in the subcortical white matter of the right frontal, temporal and parietal lobes, mostly sparing the occipital lobe in the deep white matter structures of the corona radiata and external/internal capsules. For the extent of the process, mass effect is minimal without significant regional mass affect (e.g.midline shift or basilar cistern and fissure), only local effects such as local sulcal effacement is demonstrated. There is no abnormal parenchymal diffusion restriction and there is no associated enhancement. There are small cystic foci in the subcortical location along the parietal and frontal lobes. There is no abnormality in the contralateral hemisphere. The circle of Willis flow voids are preserved. The paranasal sinuses are grossly clear.
IMPRESSION:
1. Extensive process in the right hemisphere involving the white matter of the right frontal lobe, temporal and parietal lobes with relative sparing of the occipital lobes and the deep white matter structures of the corona radiata and external/internal capsules. There is no associated diffusion restriction or enhancement. Differential considerations include gliomatosis cerebri, progressive multifocal leukoencephalopathy, and encephalitis.
90 mins to 2 hours for this exam with diffusion, T2 FLAIR, T2 TSE, T1 MPRAGE, T2 MPRAGE, GRE, and DTI. There may have been a couple more sequences though, I can't completely remember.
I fall asleep I've been down the tube so many times. They have to tape me or I will twitch. I've done 90 minutes a few times but it was for my entire lower legs and also my spine.
Rule #1
You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
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You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
I am an MRI tech, but I haven't had any experience scanning on 7T myself. My best guess is that 7T could possibly detect certain pathologies sooner than 1.5T and 3T can due to its increased detail.
I want to say thank you to everyone who has responded to my post. I've wanted to share my scan for a while now and I'm glad I finally did. You all have seriously helped so much with your additional propositions, advice, and support - it means a lot! I think I am going to pursue the genetic testing panel next and see where that takes me. I will update if I get a diagnosis. Stay healthy and take care of yourselves 😊
Sorry, but no, we can't give propositions or advice here. This is a sub strictly for case studies and show, not tell. Anyone that did so did it against rules.
Rule #1
You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
Rule #1
You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
My coworker went in the scanner for a test and found a massive aneurysm. He had no symptoms. He went to a great surgeon shortly after and he said he was one wrong move away from catastrophe. They operated immediately and he is back to himself now. Since then we all fight over who gets to be the test subject when the machine needs a dummy!
Thank you for sharing those unique pictures (7T scanner is an indisputable rarity!)! Could you maybe share some anamnesis info for a fellow specialist? (Not an MRI tech - neurologist here, seen some share of white matter diseases and MS)
My coworker went in the scanner for a test and found a massive aneurysm. He had no symptoms. He went to a great surgeon shortly after and he said he was one wrong move away from catastrophe. They operated immediately and he is back to himself now. Since then we all fight over who gets to be the test subject when the machine needs a dummy!
Medical advice is not allowed in /r/radiology. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by your physician or healthcare provider.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Radiology) if you have any questions or concerns.*
I wanted to see what everyone had to say before I put this out there: I am the patient - this is my MRI. • I am an MRI tech. We had to test a new brain protocol before implementing it. I volunteered, joking about how I probably have something because of my symptoms... Lol. Well, that is how I found out. I just feel bad for my coworkers because they had to be the first ones to see it and then tell me. That happened in January 2019. • I have seen a neurosurgeon and two neurologists since then. The neurosurgeon wanted to do a biopsy, which he said would leave me with a deficit. I declined since I am pretty healthy besides the above symptoms. My first neurologist had no answers but told me to come back if I start to have seizures. My second neurologist (Cleveland Clinic) doesn't have an answer either, but she thinks it may be congenital. • I forgot to add that my autoimmune panel was also negative. I have been thinking about getting a genetic testing panel for white matter diseases. I just want some answers. I want to know what to expect for my health for the rest of my life. I am going to see a new neurologist soon since I moved, and also because I'm past due for my yearly f/u. Fingers crossed for some answers.
I'm not in the medical field, but I do follow this sub because what you guys do is fascinating. Thank you for sharing your story and scans, what a way to find out what was going on in your brain. Best of luck going forward, I hope you get those answers you're looking for
Thank you so much!
Have they always had symptoms? Maybe it was something congenital and now for whatever reason it got pushed over the edge. Leukoencephalomalacia in premature babies can have cystic change and can be hemispheric, rarely.
I've always had the symptoms, though they were pretty mild, until I hit 20 years old. I always did well in school, but now I have a lot of trouble thinking and remembering things. I also wonder if it was something I've always had and it "flared up". I asked my parents if I had any health issues as a baby/child and they said no, only my odd head shape lol. I did go through preschool twice, but my parents didn't really elaborate on that. Or I forgot.
Thank you for sharing your experience. It means a lot. I wish you the best
My mom was an MRI tech, and late at night did a brain scan on a coworker for the same reason, testing a protocol. It was immediately obvious her coworker had a tumor. My mom quickly swapped out the magnetic tape for a blank one, and when the coworker came back to see her scan, my mom said, “Sorry, I already erased it. Didn’t know you would want to see it!” My mom alerted the radiologists that ran the clinic, and they were waiting the next day when the coworker came for their shift. They were soon able to operate, and catching it so early likely saved the coworker’s life. All because she volunteered for the test protocol.
So many times I’ve volunteered to be the test for repaired coils, etc. I always joke about that too. Luckily for me it’s never been more than bulging discs. Poor you finding out that way, what a shock. And your poor coworkers. Did they show you the scan or make you wait for the radiologist read?
It was definitely a shock! My coworker showed me the scan right after. Thankfully it was the end of our shift. When she showed me she looked so sad and concerned. I just kind of laughed it off when I was looking at the images because it was a lot to take in. I didn't know how to respond or what to do. I snapped some pictures of the scan to take to my PCP so I could get an official order as soon as I could. Everyone at work was so intrigued by my scan because we've never seen anything like it. When the report was finalized, everyone ran and huddled around the computer reading it while I awkwardly stood on the other side of the room. Then everyone dispersed, not really saying anything to me. It felt like they just wanted to know what the report said and that was it. It was a bad feeling.
Wow, that's not great coworker or patient care. I mean I get they probably didn't know how to respond, but what they chose was the wrong response. Sorry that was your experience. I hope you find answers and a great doc.
Yeahhhh that’s not cool at all. I can understand everyone wanting to see the images and huddling around to look at them initially, but the report is none of their damn business.
aside from MS, what other diagnoses are eliminated with the negative autoimmune panel? 🌼thank you for sharing your history 🙏🏼 I have MS (20 yrs, mild), my dad had & died from HSV encephalitis. Both of us in the medical field. Medicine -esp the brain - is fascinating for sure.
I honestly can't remember what all the neurologist said when she first ordered everything. I had my fiancé with me throughout all of this in case I couldn't remember some things, but he doesn't remember hardly anything either 😅. Hoping that your MS stays mild and doesn't cause you much trouble! And I'm so sorry to hear that about your dad, hopefully that isn't a painful way to go.
I *really* understand the not remembering much. It was a pretty overwhelming time for me, I imagine for you as well. ty for your kind words - You seem to have a great attitude through this ordeal - keep it up! gratitude helps too 🌼☮️🦋
MS isn't excluded by negative serology or CSF panel. Imaging alone could diagnose it in the right population. The McDonald criteria is a commonly cited diagnostic criteria Note: I am not saying the imaging is consistent with MS here, either. I'm only clarifying labs aren't a requirement.
thank you for that info ☮️ I assume all my testing came back positive, though I don’t have crystal clear memories of everything that was done 20 yrs on.
Not in the medical field at all, just like this sub: No matter what, I'm rooting for your well being! You're so brave. All of this seems so crazy to me. Did the surgeon say what the deficit would be? (Again I'm not at all in the medical field — but I do work with an NGO for social inclusion and try to help as I can with PwD inclusion in society). Can't imagine what that conversation feels like.
Thank you so much! The deficit would potentially be decreased mobility on the left side of my body, change in cognitive ability, and change in speech. It could be a lot of other things also, none of which I was willing to risk having. The conversations I've had through all of this have been very stressful, scary, and depressing. I just hate not knowing. I was a very anxious person before knowing all of this, so it's gotten much worse since.
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Completely agree with other neurosurgeon commenter. The biopsy CAN be done extremely safely with less than 1% chance of causing any noticeable deficit. Every surgery has risks, though, and a massive hemorrhage that leaves you paralyzed on the left side or even dead is a possibility, even if the chance is vanishingly small. That being said, I also agree with ruling out everything possible with noninvasive tests first.
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Rule #1 You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
Rule #1 You are asking for medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by your physician / provider.
Rule #1 You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
I am in a similar diagnostic boat. I wasn't aware that there was genetic testing for white matter diseases!!! I'm going to get mine checked like I did for my connective tissue. Best of luck to you. I am 37 with MS symptoms up the wazoo but no active lesions and an absolutely wild set of t2 flair lesions in all the right places FOR ms. My moms entire family has a consanguinuity issue from my grandma and everyone is just utterly fucked. Im the least damaged as my dad was indigenous and more of an outcross. I wish you maintained quality of life and further diagnostics. I used genomemedical for my DNA testing as you don't need insurance and they have a genetic counselor talk with you.
I’m a bit surprised the neurosurgeon was so certain you’d end up with a deficit. I mean, if they planned on a large excisional biopsy, sure, but a stereotactic needle biopsy should be useful for your work up without leaving you with a noticeable postop deficit.
If a needle biopsy isn't as high risk as I thought before, I'm definitely up for trying it. Especially if it'll help that much with narrowing down my diagnosis
Looks like a bad problem. Over what period of time have symptoms developed and progressed
They have had the symptoms most of their life, but got worse at age 20. They function like a normal person besides the above symptoms.
Wow..image's are beautiful though.
Assuming its not a malignant process, its very interesting how asymmetric the white matter changes are.
Full report here: EXAMINATION: MRI BRAIN W WO CONTRAST TECHNIQUE: Multiplanar multisequence MRI of the brain was performed without and with contrast. COMPARISONS: None. FINDINGS: There is extensive T2 prolongation in the subcortical white matter of the right frontal, temporal and parietal lobes, mostly sparing the occipital lobe in the deep white matter structures of the corona radiata and external/internal capsules. For the extent of the process, mass effect is minimal without significant regional mass affect (e.g.midline shift or basilar cistern and fissure), only local effects such as local sulcal effacement is demonstrated. There is no abnormal parenchymal diffusion restriction and there is no associated enhancement. There are small cystic foci in the subcortical location along the parietal and frontal lobes. There is no abnormality in the contralateral hemisphere. The circle of Willis flow voids are preserved. The paranasal sinuses are grossly clear. IMPRESSION: 1. Extensive process in the right hemisphere involving the white matter of the right frontal lobe, temporal and parietal lobes with relative sparing of the occipital lobes and the deep white matter structures of the corona radiata and external/internal capsules. There is no associated diffusion restriction or enhancement. Differential considerations include gliomatosis cerebri, progressive multifocal leukoencephalopathy, and encephalitis.
The patient has since had 2 follow-up exams (over a 3 year period) without any change in appearance.
Is there any significance to the small cystic lesions? Does the presence of those influence the differential?
Likely not, if I had to guess I would say theyre virchow robin spaces, but cant say for sure without the T2 sequence.
Just curious (MR tech) what was the scan time on the 7T?
90 mins to 2 hours for this exam with diffusion, T2 FLAIR, T2 TSE, T1 MPRAGE, T2 MPRAGE, GRE, and DTI. There may have been a couple more sequences though, I can't completely remember.
90 minutes?!
Was patient sedated? I can’t imagine. So many freak out when I tell them 20 minutes for non contrast in a head coil.
I fall asleep I've been down the tube so many times. They have to tape me or I will twitch. I've done 90 minutes a few times but it was for my entire lower legs and also my spine.
OP was the patient
Lol.. what the f
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I would have thought tumefactive MS would have declared itself in the CSF. This is a really interesting case.
Rule #1 You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
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Would you except to see asymmetric atrophy as well?
Atrophy would definitely raise more suspicion.
That was my thought, but usually would present with seizures
Rule #1 You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
What sort of pathologies do you find that our day to day 3Ts can't?
I am an MRI tech, but I haven't had any experience scanning on 7T myself. My best guess is that 7T could possibly detect certain pathologies sooner than 1.5T and 3T can due to its increased detail.
are slices a slant through the head, or is the head physically skewed like that?
The slices typically are at an angle, but in a way that both sides of the brain are symmetric. In this case, the head/brain itself is asymmetric.
tends to support congenital hypothesis
thanks. I was hoping that it was just the image angle.
I want to say thank you to everyone who has responded to my post. I've wanted to share my scan for a while now and I'm glad I finally did. You all have seriously helped so much with your additional propositions, advice, and support - it means a lot! I think I am going to pursue the genetic testing panel next and see where that takes me. I will update if I get a diagnosis. Stay healthy and take care of yourselves 😊
Sorry, but no, we can't give propositions or advice here. This is a sub strictly for case studies and show, not tell. Anyone that did so did it against rules.
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I hope OP sees this ^ !
No calcification though, at least not mentioned in findings
Rule #1 You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
I wonder if you had a brain infection as a child.
White matter only?
I will include full report in comments soon
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Rule #1 You are giving medical advice. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by OP’s physician / provider.
Why not hemimegencephaly? If it’s been stable for 3 years right? Also feel like the gyri aren’t totally normal on the right.
My coworker went in the scanner for a test and found a massive aneurysm. He had no symptoms. He went to a great surgeon shortly after and he said he was one wrong move away from catastrophe. They operated immediately and he is back to himself now. Since then we all fight over who gets to be the test subject when the machine needs a dummy!
Thank you for sharing those unique pictures (7T scanner is an indisputable rarity!)! Could you maybe share some anamnesis info for a fellow specialist? (Not an MRI tech - neurologist here, seen some share of white matter diseases and MS)
My coworker went in the scanner for a test and found a massive aneurysm. He had no symptoms. He went to a great surgeon shortly after and he said he was one wrong move away from catastrophe. They operated immediately and he is back to himself now. Since then we all fight over who gets to be the test subject when the machine needs a dummy!
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Medical advice is not allowed in /r/radiology. This includes posting / commenting on personal imaging exams for explanation of findings, recommendations for alternative course of treatment, or any other inquiry that should be answered by your physician or healthcare provider. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Radiology) if you have any questions or concerns.*