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 ??

I think you have escalated an incidental finding to the cause of your symptoms and assumed a deliberate with holding of information and 'dismissal'

Loads of stuff shows up on scans which are incidental, insignificant and asymptomatic and not a problem. If Dr's spent their lives describing all the incidental, asymptomatic insignificant findings it would make identifying the significant issues a problem. They'd then spend ages reassuring patients it's a normal observation (in this case 13% of posters on here would have same finding on a scan). Many patients then focus on the normal incidental finding and tell everyone they have a lump, mass, shadow and worry they have a serious issue without ever being reassured. They then attribute every symptom to that and start to notice more symptoms they expect to have. Its unhelpful. Tbh it's best not to know!

Cysts can come and go. Do you get anxious a lot?

Get the NHS app - You will then be able to read all your communication to/from the doctor/hospital for yourself!

This, doctors don't share everything they share what is relevant otherwise it would be feeding hydrochonriacs

Exactly this.

Patients aren’t trained to interpret clinical findings and can place significance on things which are trivial. It’s easy to see something on a scan and assume it’s significant when in reality, it’s an incidental finding and unrelated to the reason you had the scan.

Retention cysts in that area often just resolve on their own and tend to be self-limiting, hence why there was no need to mention it.

If you don’t trust your GP, change GPs. No good will come of you trying to interpret complex medical data you haven’t been trained to read.

Don't be so obtuse - the OP has unpleasant and worrying symptoms.

And no - not everyone gets cysts that come and go

I would want further explanation/investigation on pineal gland.

The tone of some of these posts seem to imply that OP is a hypochondriac when her symptoms are clearly quite worrying.

What would be helpful is if there were some sort of disclaimer on the reports explaining to patients what is meant by “incidental findings”. This would put patients’ minds at rest and save time for doctors who have to explain this to patients who are, understandably, panicking.

Do you have health anxiety?

There are so many threads like this though, where OP is obsessing over something heath related and it's all down to health anxiety. This OP could just ask her doctor.

Exactly!! And if OP is able to be reassured, she will be reassured by this; if not, she won't, and nothing else will reassure her either.

In most countries scans are explained image in hand to the patient by specialists. It is much better.
Our system plain sucks. Withholding information doesn't save time. It breaks trust and increases the risk of missing diagnoses.

Patients deserve to know, however trivial it may seem to the doctor at the time.

Health anxiety is not hypochondria; you shouldn't be using such an outdated and derogatory term.

Patients aren’t trained to interpret clinical findings and can place significance on things which are trivial. It’s easy to see something on a scan and assume it’s significant when in reality, it’s an incidental finding and unrelated to the reason you had the scan.

No good will come of you trying to interpret complex medical data you haven’t been trained to read.

^^ this.

Patients are not meant to understand all their medical notes.

If an incidental finding is significant, it will be acted upon; in your case it's clearly not significant.

I have a pineal gland cyst that was found during a head CT for something else. I was referred to neurosurgery. I was told that they are super common and usually are discovered when under investigation for something else.

I was under them for 3 years and got yearly MRI’s to check if it got bigger, it didn’t. It did it smaller to the point they wouldn’t even see me now if it had been discovered today.

OP you have my sympathy.

While "Not All Doctors" unfortunately there are a good cohort that seem to come under the banner of a joke that has stuck with me after decades of medical obfuscation and arrogance, applied not just to myself but numerous family and friends:

"What's the difference between Gid and a doctor?"

"God doesn't think he's a doctor".

The prevailing attitude of some that patients should not question or be pro-active in health care processes leads to loss of trust and poor outcomes that could have been avoided by clearer communication leading to mutual respect.

I hope you can get to the bottom of this.

This immediate leap to "it's psychological" in so many scenarios is condescending and breeds animosity, and is often a useful tool in the "avoiding accountability" handbook of too many professionals / authority figures.

Did you read any of the reassuring replies OP has had? Or are you just looking to feed her anxiety?

Yes it is. It used to be called hypochondria now it’s called health anxiety - the same thing.

Point is she needed those reassuring replies from the doctors. I can't comment on the specifics of her medical situation as I'm not a doctor and not qualified to do so. However, I am qualified to empathise with frustration at poor or non-existent communication from doctors that help create and exacerbate anxiety in the first place.

No, it's not the same. Hypochondria is derogatory, health anxiety is a descriptor. People don't choose to have health anxiety. Do you use other slurs too because "they're exactly the same?".

You don't know what communication she's had with her doctors. Feeding into her anxiety like that is cruel, not empathetic.

Hypochondria was a medical word that became derogatory - I don’t use it because it’s outdated.

She has neurological symptoms. Do you get condescending a lot?

It’s incidental. If you go through every incidental finding with patients, you’d be all day with one. Incidental = not worth mentioning. It’s not ‘keeping information from me’, that’s bizarre, why would a health professional want to do this, they don’t. Human bodies get all sorts of lumps and bumps and stuff, doesn’t necessarily mean any of it’s a problem though, so you just get told if it IS a problem.

Cysts are very common and you can have them virtually anywhere. As others have said, this is not an issue and OP should focus on asking for help with her symptoms, not looking to punish someone.