Every so often, a scan reveals something unrelated to your MS, such as a small cyst, a benign lump, a blood vessel variation, or a bit of inflammation in your sinuses.
Yep, this is me. Incidental small meningioma picked up on MRI in 2023 (possibly there since 2018). Watch & Wait for a year and then a year of it growing on two consecutive six month scans so surgery was recommended whilst it was still relatively small and uncomplicated. Had the surgery a couple of months ago. I was referred to a neurosurgeon as soon as the meningioma was confirmed and he took over care and action for it, whilst my neurologist continued to manage my MS care but also offered advice too. Fantastic neurosurgical team who were always cognizant of my MS throughout. I completely agree with the emotional impact. One of my biggest worries was how surgery to the brain might affect my MS. Also my neurosurgeon said that radiation wouldn't be recommended for me because of my MS. Conversely, am thankful for my MS because without it I probably wouldn't have known about it until the meningioma had started to cause symptoms and been much bigger. Also my neurosurgeon isn't worried about ongoing monitoring post-surgery because we're already doing MRIs because of my MS. I've also come across a few others like me who have MS and who have been diagnosed with meningiomas.
You remind me of the century of MS autopsies carried out on MS cases, throwing away meningeal tissues (both leptomeningeal and dural) with 'inflammation, as 'incidental', 'accidental' or irrelevant. Stephen Hauser makes the point in his lovely book ('The face laughs while the Brain Cries'). These, his mentors assured him to be 'postmortem artefacts' 'This inflammation has nothing to do with MS. It is seen in every brain regardless of the cause of death' The wisdom of experts. Despite the most detailed observations of James Dawson,(1916!!) 'these meningeal changes are 'of the greatest importance in relation to the pathogenesis of disseminated sclerosis'. Meningeal inflammations and their topography have suddenly become the 'flavour of the moment' and the clever explanation of 'progression', the Real MS'
You can see therefore my irritation when 40 years worth of publications to try to stimulate action on the remarkable associations and significant similarities between paranasal sinus mucosal inflammations and MS, virtually ignored. Not least irritated when you classify the commonest 'incidental' finding in MS cases as "Inflammation or fluid of the sinuses picked up at the edge of a brain scan'' I wish I had stuck to my guns' writes Stephen Hauser.....but I didn't due to my respect for the wisdom of experts' I think I will stick to my guns. If at all interested Mr Google will provide the published data.
I think you are onto something. It is amazing how common comorbid sinusitis is when you look for it in people with MS. Since speaking to you, I have always looked for it, and I would estimate that 3-4 out of 10 monitor scans have comorbid paranasal inflammation.
The hypothesis relating to mucosal inflammatory foci really relates to the recent observations of lymphatic and perivascular channels potentially leaving the possibility of 'nose to brain ' communications with the Dura and arachnoid, and hence to perivascular channels and of course, CSF. The anatomy is highly variable of course, so it's not a question of the presence or even severity of the inflammation, but its location ind indolence, not to mention the microbiome in residence. Not easily resolved, but I believe that the rather remarkable observation that MS associated ON is almost invariably unilateral holds the key to resolve the mystery. This is in marked contrast to autoimmune conditions depending on a symmetrical attack across the BBB., nearly always bilateral, and outside-in of course. On we go! Thanks for your positive comment. Best wishes for a rapid and vigorous return to your remarkable work for PwMS.
In 2017 a small left parafalcine meningioma was found on my routine MRI scanning. It was monitored for 5 years. My neurologist referred me to a neurosurgeon in 2021 as it was slowly growing although I had gone through menopause. Removal was recommended by my neurosurgeon while it was still small and easily accessible, which reduced the risks involved. I had this done in 2022 with a wonderful easy recovery and no complications. I also had an incidental finding of asymptomatic disc bulging C4/C5.
I always get a copy of any and all of my test results, including specialist letters from my doctors. This helps me keep track of my health and often helps with future medical professionals. Often these get lost or are inaccessible over the years. I have even challenged a specialist who said I was a liar, and that he had not recommended something many years earlier, I was able to show him his own letter stating that he had. It is important self advocate, doctors are human too
100% agree on keeping your own records of all your results, images, reports, letters etc. Makes it so much easier if you switch doctors at any point in the future or if you want to get a second opinion, so you’re not trying to track down records when you’re sick and need them urgently (been there 🫠). You can also usually convince them to give you a copy at no additional cost if you ask for it at the time, vs however many months or years later and now you’re being charged an administrative fee for them to collate everything 🙄
So far my MS MRI incidental findings include two cysts with very specific names that I believe are somewhere in my sinus/back of throat, a partially imaged kidney cyst, and the most interesting of them all, a duplicated inferior vena cava (good to know about if I’m ever having emergency abdominal surgery 😂) — I’m sure they will find more things for me in future scans haha. And both predate the MS, but my chiari malformation and syringomyelia were listed as incidental findings because they were looking for something else when they found them… although I’d argue not truly incidental because that MRI was for ultimately related symptoms 🤷♀️.
I don't hear anything about my MRI scan unless there is anything of note. I wouldn't know unless I requested the report with a SAR or the MS team told me. Woujd they tell me if it just needed monitoring on MRI? I font know. To be honest, Im quite happy with that. It's the same with Siponimod monitoring blood tests. They email me if there's anything to say other than its all fine. A friend had an MRI to investigate his back pain and they saw an aortic aneurysm and whisked him into surgery before it could kill him.
Whether or not something requires further monitoring or intervention isn’t always clear from just the scans and comes down to a judgment call on how much risk they are comfortable with vs being proactive/cautious. We deserve the opportunity to be a part of that decision, but we are often left out of it when it comes to incidental findings. Sometimes they don’t mention it because they think someone else will, or it just gets lost in amongst everything and someone forgets to call you (mistakes are made!).
I think it’s important to be getting a copy of your reports and to understand at least the basics of how to read them, so there’s one final set of eyes to catch anything that’s been missed by the professionals.
Of course mistakes are made. HCPs are "only" human. I can obtain my reports and read them with understanding, but I have to build some level of trust, that goes both ways, between us. Constantly querying if an incidental finding was missed doesn't seem like a way to do this. I don't think patients necessarily make good decisions. We lack the detailed medical knowledge that Dr Google can't give us.
Hi, yep, it happened to me. MS MRI in December 2022 found a low-grade glioma. It had apparently gone unnoticed on my original 2014 scan [In AUS]. I had follow-ups with a neurosurgeon and scans for 2 years. No change was recorded since my original 2014 scan. That made no change in 10 years, so I was 'signed off' with no treatment required. It has probably been there my entire life, so to be honest, I didn't think about it while it was being monitored, and I never think about it now. I have, as far as I know, never had any symptoms of anything other than my MS, and that's enough for any of us to be dealing with. I realise I am probably lucky, but I dare say if we all had a full body scan they would find all sorts of wonderful anomalies. I had an abdominal ultrasound for MS-related bladder issues and was asked if my fibroids had ever bothered me over the years. I said no, I didn't even know I had fibroids!! Vive hodie!
I agree about the anomalies. One of my friends had red flags on her pregnancy notes because one of her kidneys was found to be in her pelvis. Kind of important if she had needed a caesarian.
I have recently found out that I have a thoracic syrinx. It wasn’t mentioned before but the report this year said there was ‘no change to the thoracic syrinx’. I looked it up and was concerned but they are obviously keeping an eye on it.
My sister had an MRI, I don't even remember what for. She was told "and of course there is your scoliosis, but you'll know about that already'. Her response was "I have scoliosis?" Never assume that your patient already knows!
That is shocking, hope your sister is doing okay. I must admit I felt shocked they never told me because when I saw it mentioned on the report and looked it up I worried. It plays on my mind.
Yes, she's fine. I think after the initial "Oh that's news" she decided that explained why one side of her torso had always felt shorter than the other side. Interestingly, my youngest daughter has her aunt's flat feet and scoliosis, My middle daughter had hip dysplasia like me and my mum and the eldest has my ridiculously high arches. When I was diagnosed with MS, someone asked me if my feet had always been that shape. They have. We are going through the "adjusting to possible news while awaiting diagnosis" with my youngest who is being investigated for Sleep Apnea. Not what you want a month before your wedding!
As long as the syrinx is being monitored to make sure it’s stable in size you shouldn’t need to worry too much about it. If the syrinx is secondary to chiari malformation (like mine), then it would be something I’d be chasing them about because it suggests the chiari malformation is severe enough to be disrupting csf flow and likely requires surgery.
I feel you on not being told about it earlier though, I’ve had that experience too. I always make sure to get a copy of the report and the images for every MRI (or other scan) I get now — that way I can proactively ask questions and follow up anything mentioned on there, even if it is something that ultimately isn’t a concern (at least for now), it’s important to be fully informed! Unfortunately at the end of the day, the only person we can truly rely on is ourselves.
In the US, at least in PA, law requires notification to the scanned person, of anything particularly worrisome, whatever it is. A separate paper mailing to your mailbox. The whole image is apparently reviewed in detail. I'm 68 now, have learned about Kidney cysts and Aneurisms, which are being "followed". Scoliosis is noted but no big deal was made of that; I think a domino consequence of leg limp which developed 20 years later after a relapse. So first, it was MS to learn to live with. Then later, on the others. I think gliding into old age is something we expect, but happens a lot less than we are aware. Becoming aware can be quite useful, so try not to avoid. For those feeling they are left uninformed, at least in the US, Dr's notes are copied online into your "portal", which you sign up for and have access to. I review all of mine.
I'll throw this last bit in for the sake of Irony. I was a long time smoker, making me eligible for yearly lung scans. They found a tumor early and it was successfully and easily (relative, of course) removed. Who knows if it will recur. The ironic part is that through Biomarker testing, the type of cancer is ROS1, which occurs in non smokers mostly. Known as the "bad luck" cancer. So had I not smoked, there would have been no annual scans, and probably the tumor would have progressed to stage 3 or 4 before being identified. So smoking was a blessing? Moral of all of this- tests are "good, not bad". When you sign up to be a person, it comes with the territory, so don't step over it, in my opinion. We are very lucky to be in developed countries.
I've had something similar. Not MRI though. I had a CT because I've had hiccups for over a year. There was nothing on there to explain the hiccups. But they did find several spinal fractures. I have no pain or knowlege of them before.
Yes- I have a pineal cyst that often gets a mention and retention cyst in my maxillary sinus which explains my drippy nose. Nothing to be concerned about. MS is enough!!
Yes, in my initial workup (2013) for MS, I had MS lesions in both brain and C3-4. But there were also three other incidentalomas. In my R frontoparietal area under the motor strip there was a larger diffuse lesion suspected to be a low grade glioma ( astrocytoma or oligodendroglioma). This was followed twice a year by an oncologist and my MS specialist via MRI to check possible growth or change. I did not have a biopsy because it was too diffuse & close to visual areas and could also have damaged my hand function. After 12 years it never changed, so the thinking is that it may be a very atypical MS lesion. Thankfully I never had a biopsy or brain surgery that created more disability beyond MS related changes. . The second finding was multiple thyroid cysts. I have these checked yearly with ultrasound. And periodically I get mentions of sinus related changes and mastoid changes.
During the first 3-5 years I had a lot of anxiety that I had both cancer and MS but as time went on I became less anxious as the diffuse tumors and the thyroid cysts did not behave as cancer would. I now only see the oncologist once per year.
I had an ovarian cyst as my incidentaloma. Very poorly handled by my MS team (which my neuro apologised for profusely) as I was just handed a piece of paper telling me something on my MRI needed investigation. In the end it disappeared of its own accord, as these things tend to do, the anxiety created is the most memorable piece. Very happy to have a word for it now
Mine was a single unilateral nasal polyp. It was a good find as ENT were concerned that it was going to be a malignant growth. It turned out that it wasn't thankfully. I have also had a pancreatic cyst discovered for which I now get annual scans. Another good incidental find, something that can now be monitored.
Yep, this is me. Incidental small meningioma picked up on MRI in 2023 (possibly there since 2018). Watch & Wait for a year and then a year of it growing on two consecutive six month scans so surgery was recommended whilst it was still relatively small and uncomplicated. Had the surgery a couple of months ago. I was referred to a neurosurgeon as soon as the meningioma was confirmed and he took over care and action for it, whilst my neurologist continued to manage my MS care but also offered advice too. Fantastic neurosurgical team who were always cognizant of my MS throughout. I completely agree with the emotional impact. One of my biggest worries was how surgery to the brain might affect my MS. Also my neurosurgeon said that radiation wouldn't be recommended for me because of my MS. Conversely, am thankful for my MS because without it I probably wouldn't have known about it until the meningioma had started to cause symptoms and been much bigger. Also my neurosurgeon isn't worried about ongoing monitoring post-surgery because we're already doing MRIs because of my MS. I've also come across a few others like me who have MS and who have been diagnosed with meningiomas.
You remind me of the century of MS autopsies carried out on MS cases, throwing away meningeal tissues (both leptomeningeal and dural) with 'inflammation, as 'incidental', 'accidental' or irrelevant. Stephen Hauser makes the point in his lovely book ('The face laughs while the Brain Cries'). These, his mentors assured him to be 'postmortem artefacts' 'This inflammation has nothing to do with MS. It is seen in every brain regardless of the cause of death' The wisdom of experts. Despite the most detailed observations of James Dawson,(1916!!) 'these meningeal changes are 'of the greatest importance in relation to the pathogenesis of disseminated sclerosis'. Meningeal inflammations and their topography have suddenly become the 'flavour of the moment' and the clever explanation of 'progression', the Real MS'
You can see therefore my irritation when 40 years worth of publications to try to stimulate action on the remarkable associations and significant similarities between paranasal sinus mucosal inflammations and MS, virtually ignored. Not least irritated when you classify the commonest 'incidental' finding in MS cases as "Inflammation or fluid of the sinuses picked up at the edge of a brain scan'' I wish I had stuck to my guns' writes Stephen Hauser.....but I didn't due to my respect for the wisdom of experts' I think I will stick to my guns. If at all interested Mr Google will provide the published data.
I think you are onto something. It is amazing how common comorbid sinusitis is when you look for it in people with MS. Since speaking to you, I have always looked for it, and I would estimate that 3-4 out of 10 monitor scans have comorbid paranasal inflammation.
The hypothesis relating to mucosal inflammatory foci really relates to the recent observations of lymphatic and perivascular channels potentially leaving the possibility of 'nose to brain ' communications with the Dura and arachnoid, and hence to perivascular channels and of course, CSF. The anatomy is highly variable of course, so it's not a question of the presence or even severity of the inflammation, but its location ind indolence, not to mention the microbiome in residence. Not easily resolved, but I believe that the rather remarkable observation that MS associated ON is almost invariably unilateral holds the key to resolve the mystery. This is in marked contrast to autoimmune conditions depending on a symmetrical attack across the BBB., nearly always bilateral, and outside-in of course. On we go! Thanks for your positive comment. Best wishes for a rapid and vigorous return to your remarkable work for PwMS.
In 2017 a small left parafalcine meningioma was found on my routine MRI scanning. It was monitored for 5 years. My neurologist referred me to a neurosurgeon in 2021 as it was slowly growing although I had gone through menopause. Removal was recommended by my neurosurgeon while it was still small and easily accessible, which reduced the risks involved. I had this done in 2022 with a wonderful easy recovery and no complications. I also had an incidental finding of asymptomatic disc bulging C4/C5.
I always get a copy of any and all of my test results, including specialist letters from my doctors. This helps me keep track of my health and often helps with future medical professionals. Often these get lost or are inaccessible over the years. I have even challenged a specialist who said I was a liar, and that he had not recommended something many years earlier, I was able to show him his own letter stating that he had. It is important self advocate, doctors are human too
100% agree on keeping your own records of all your results, images, reports, letters etc. Makes it so much easier if you switch doctors at any point in the future or if you want to get a second opinion, so you’re not trying to track down records when you’re sick and need them urgently (been there 🫠). You can also usually convince them to give you a copy at no additional cost if you ask for it at the time, vs however many months or years later and now you’re being charged an administrative fee for them to collate everything 🙄
So far my MS MRI incidental findings include two cysts with very specific names that I believe are somewhere in my sinus/back of throat, a partially imaged kidney cyst, and the most interesting of them all, a duplicated inferior vena cava (good to know about if I’m ever having emergency abdominal surgery 😂) — I’m sure they will find more things for me in future scans haha. And both predate the MS, but my chiari malformation and syringomyelia were listed as incidental findings because they were looking for something else when they found them… although I’d argue not truly incidental because that MRI was for ultimately related symptoms 🤷♀️.
I don't hear anything about my MRI scan unless there is anything of note. I wouldn't know unless I requested the report with a SAR or the MS team told me. Woujd they tell me if it just needed monitoring on MRI? I font know. To be honest, Im quite happy with that. It's the same with Siponimod monitoring blood tests. They email me if there's anything to say other than its all fine. A friend had an MRI to investigate his back pain and they saw an aortic aneurysm and whisked him into surgery before it could kill him.
Whether or not something requires further monitoring or intervention isn’t always clear from just the scans and comes down to a judgment call on how much risk they are comfortable with vs being proactive/cautious. We deserve the opportunity to be a part of that decision, but we are often left out of it when it comes to incidental findings. Sometimes they don’t mention it because they think someone else will, or it just gets lost in amongst everything and someone forgets to call you (mistakes are made!).
I think it’s important to be getting a copy of your reports and to understand at least the basics of how to read them, so there’s one final set of eyes to catch anything that’s been missed by the professionals.
Of course mistakes are made. HCPs are "only" human. I can obtain my reports and read them with understanding, but I have to build some level of trust, that goes both ways, between us. Constantly querying if an incidental finding was missed doesn't seem like a way to do this. I don't think patients necessarily make good decisions. We lack the detailed medical knowledge that Dr Google can't give us.
I often get a sinus-related comment from my radiologist due to my CPAP stimulated sinus cavities.
Hi, yep, it happened to me. MS MRI in December 2022 found a low-grade glioma. It had apparently gone unnoticed on my original 2014 scan [In AUS]. I had follow-ups with a neurosurgeon and scans for 2 years. No change was recorded since my original 2014 scan. That made no change in 10 years, so I was 'signed off' with no treatment required. It has probably been there my entire life, so to be honest, I didn't think about it while it was being monitored, and I never think about it now. I have, as far as I know, never had any symptoms of anything other than my MS, and that's enough for any of us to be dealing with. I realise I am probably lucky, but I dare say if we all had a full body scan they would find all sorts of wonderful anomalies. I had an abdominal ultrasound for MS-related bladder issues and was asked if my fibroids had ever bothered me over the years. I said no, I didn't even know I had fibroids!! Vive hodie!
I agree about the anomalies. One of my friends had red flags on her pregnancy notes because one of her kidneys was found to be in her pelvis. Kind of important if she had needed a caesarian.
I have recently found out that I have a thoracic syrinx. It wasn’t mentioned before but the report this year said there was ‘no change to the thoracic syrinx’. I looked it up and was concerned but they are obviously keeping an eye on it.
My sister had an MRI, I don't even remember what for. She was told "and of course there is your scoliosis, but you'll know about that already'. Her response was "I have scoliosis?" Never assume that your patient already knows!
That is shocking, hope your sister is doing okay. I must admit I felt shocked they never told me because when I saw it mentioned on the report and looked it up I worried. It plays on my mind.
Yes, she's fine. I think after the initial "Oh that's news" she decided that explained why one side of her torso had always felt shorter than the other side. Interestingly, my youngest daughter has her aunt's flat feet and scoliosis, My middle daughter had hip dysplasia like me and my mum and the eldest has my ridiculously high arches. When I was diagnosed with MS, someone asked me if my feet had always been that shape. They have. We are going through the "adjusting to possible news while awaiting diagnosis" with my youngest who is being investigated for Sleep Apnea. Not what you want a month before your wedding!
As long as the syrinx is being monitored to make sure it’s stable in size you shouldn’t need to worry too much about it. If the syrinx is secondary to chiari malformation (like mine), then it would be something I’d be chasing them about because it suggests the chiari malformation is severe enough to be disrupting csf flow and likely requires surgery.
I feel you on not being told about it earlier though, I’ve had that experience too. I always make sure to get a copy of the report and the images for every MRI (or other scan) I get now — that way I can proactively ask questions and follow up anything mentioned on there, even if it is something that ultimately isn’t a concern (at least for now), it’s important to be fully informed! Unfortunately at the end of the day, the only person we can truly rely on is ourselves.
Thank you. I am seeing my Nurse in a couple of weeks and I will ask if the syrinx is a direct result of the MS. I hope your syrinx stays stable.
In the US, at least in PA, law requires notification to the scanned person, of anything particularly worrisome, whatever it is. A separate paper mailing to your mailbox. The whole image is apparently reviewed in detail. I'm 68 now, have learned about Kidney cysts and Aneurisms, which are being "followed". Scoliosis is noted but no big deal was made of that; I think a domino consequence of leg limp which developed 20 years later after a relapse. So first, it was MS to learn to live with. Then later, on the others. I think gliding into old age is something we expect, but happens a lot less than we are aware. Becoming aware can be quite useful, so try not to avoid. For those feeling they are left uninformed, at least in the US, Dr's notes are copied online into your "portal", which you sign up for and have access to. I review all of mine.
I'll throw this last bit in for the sake of Irony. I was a long time smoker, making me eligible for yearly lung scans. They found a tumor early and it was successfully and easily (relative, of course) removed. Who knows if it will recur. The ironic part is that through Biomarker testing, the type of cancer is ROS1, which occurs in non smokers mostly. Known as the "bad luck" cancer. So had I not smoked, there would have been no annual scans, and probably the tumor would have progressed to stage 3 or 4 before being identified. So smoking was a blessing? Moral of all of this- tests are "good, not bad". When you sign up to be a person, it comes with the territory, so don't step over it, in my opinion. We are very lucky to be in developed countries.
I've had something similar. Not MRI though. I had a CT because I've had hiccups for over a year. There was nothing on there to explain the hiccups. But they did find several spinal fractures. I have no pain or knowlege of them before.
Yes- I have a pineal cyst that often gets a mention and retention cyst in my maxillary sinus which explains my drippy nose. Nothing to be concerned about. MS is enough!!
Yes, in my initial workup (2013) for MS, I had MS lesions in both brain and C3-4. But there were also three other incidentalomas. In my R frontoparietal area under the motor strip there was a larger diffuse lesion suspected to be a low grade glioma ( astrocytoma or oligodendroglioma). This was followed twice a year by an oncologist and my MS specialist via MRI to check possible growth or change. I did not have a biopsy because it was too diffuse & close to visual areas and could also have damaged my hand function. After 12 years it never changed, so the thinking is that it may be a very atypical MS lesion. Thankfully I never had a biopsy or brain surgery that created more disability beyond MS related changes. . The second finding was multiple thyroid cysts. I have these checked yearly with ultrasound. And periodically I get mentions of sinus related changes and mastoid changes.
During the first 3-5 years I had a lot of anxiety that I had both cancer and MS but as time went on I became less anxious as the diffuse tumors and the thyroid cysts did not behave as cancer would. I now only see the oncologist once per year.
I had an ovarian cyst as my incidentaloma. Very poorly handled by my MS team (which my neuro apologised for profusely) as I was just handed a piece of paper telling me something on my MRI needed investigation. In the end it disappeared of its own accord, as these things tend to do, the anxiety created is the most memorable piece. Very happy to have a word for it now
Mine was a single unilateral nasal polyp. It was a good find as ENT were concerned that it was going to be a malignant growth. It turned out that it wasn't thankfully. I have also had a pancreatic cyst discovered for which I now get annual scans. Another good incidental find, something that can now be monitored.