For doctors to have hidden this from me?

[JustsamanthaJayne]

So I've been ill for several years, symptoms have worsened since last year year
One of my symptoms is a facial spasm where my brain feels like it's squeezing and then my mouth goes to the side for a few seconds it's been worrying me
So I had an mri in 2018 they told me everything was fine and then had another mri in 2024 I was told i have an pineal gland cyst which is incidental
So i requested my medical records and on my 2018 mri report it said I have a small retention cyst in my right maxillary sinus ( this would explain why I've had so many sinus issues and now it could explain the facial issues as well) but they didn't tell me about it??
Now I've suddenly developed a pineal gland cysts but no mention of the right maxillary cyst on on my recent mri scan?? Did it just disappear?
I don't understand why I'm getting 'incidentental' cysts at random like this and doctors are not concerned about this ?
My folate is low again with no explanation ? I constantly drained and having horrible nurological symptoms
Am I being unreasonable to be dismissed like this ??

A very common symptom of an over-stretched medical service is lack of attention to care, communication and follow-up.

@smallmercies as Forest Gump so rightly quotes - stupid is as stupid does!

Small mucus retention cyst - common, unlikely to cause any symptoms and has now self-resolved. Unlikely to be relevant to your symptoms. Similar findings are very common on scans and wouldn't be classed as 'abnormal'. So your previous MRI was normal.

Small pineal gland cyst - very common, rarely causes symptoms, rarely needs treatment. Might warrant a follow up MRI to check it doesn't change - probably not needed though.

Both can be true at the same time, and OP posted about this exact thing last year.

Good point, I feel more compassion knowing she’s been struggling with a complex health issue for so long. Thanks for letting us know.

Wow some of the comments on this thread are awful. Any neurological condition is scary and the investigation is often long and vague. OP, I'm not a Doctor but one sided facial spasm sounds more like HFS and most who have this rare condition spend years trying to get a diagnosis are misdiagnosed around 3 times throughout the journey and don't even start on the treatment.

Cysts don't always go away, as a PP said. The one in the centre of my brain, took 2 Neurosurgeons 7 hours to remove.

I deal with complaints from patients frequently. Complaints around not being told about incidental findings are common. The response from the doctors is always the same : if it isn’t clinically significant we aren’t going to tell you

incidental finding of 6cm AAA - they will tell you

incidental finding of cyst - they aren’t going to tell you

Unfortunately we do see a lot of patients with health anxiety, it’s often the case these patients will latch on to an incidental finding and run with it down another rabbit hole. It’s often the case that during their first or second round of investigations they have had good communication from clinicians but this hasn’t helped with the anxiety. Access to medical records is a good thing. People should advocate for themselves. Health anxiety + access to medical records + Google is not always the best thing for a patient.

But health anxiety is unsurprising if information is being withheld because someone said it should be. This is what is wrong with that system, it shouldn't be up to some doctor, it's up to the patient.
I'm not surprised that people get anxiety about their health if that's the situation.

@JustsamanthaJayne have they considered neuralgia triggered by nerve pain? Nerve issues might explain the mouth drop. Do you have pain in your face at all?

But health anxiety is unsurprising if information is being withheld because someone said it should be. This is what is wrong with that system, it shouldn't be up to some doctor, it's up to the patient.
I'm not surprised that people get anxiety about their health if that's the situation

Nothing is being withheld though, because nothing is wrong. You don’t tell people what’s not wrong unless you are working through a diagnosis pathway by exclusion. So, if they are suffering severe headaches and have an MRI, it would be appropriate to say ‘you don’t have a brain tumour’. You don’t need to detail everything else in the MRI that isn’t a cause of ill health.

What you are saying is more relevant to serendipitous discoveries that are relevant. For example, a motorist is hit by a drunk driver, they come in with cause to check for head injuries. A scan picks up they have a brain tumour. That had nothing to do with the accident, it s not currently causing adverse symptoms but is NOT normal. So, that information is NOT withheld! However, you do not have a discussion with an 85yo that their skin has lost a significant amount of elasticity and that’s why it has a saggy/wrinkled appearance, as that is in range of ‘normal’, and so are cysts that do not pose any problem (as I said above, various lumps and bumps on people are considered ‘normal’). If it is something not within the range of normal, then you would advise someone and with appropriate discussion.

There is zero point telling someone they are normal as they have two arms and two legs; or because they have wrinkled thinning skin as an 85yo; or, that they have an innocuous cyst that will never bother them - because all of that is normal. People only need to know about abnormal findings.

Perfectly put.