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Original poster

For doctors to have hidden this from me?

136 replies

JustsamanthaJayne · 16/04/2025 18:28

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 ??

OP posts:
Commonsense22 · 17/04/2025 07:31

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.

Smallmercies · 17/04/2025 07:31

BobbleHatsRule · 17/04/2025 02:56

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!

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.

Smallmercies · 17/04/2025 07:29

ItsUpToYou · 17/04/2025 07:27

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.

Edited

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.

Smallmercies · 17/04/2025 07:28

Do you have health anxiety?

ItsUpToYou · 17/04/2025 07:27

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.

springintoaction321 · 17/04/2025 07:11

AmusedGoose · 17/04/2025 03:02

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

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

And no - not everyone gets cysts that come and go Confused

I would want further explanation/investigation on pineal gland.

SpidersAreShitheads · 17/04/2025 06:49

BobbleHatsRule · 17/04/2025 02:56

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!

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.

BlondiePortz · 17/04/2025 06:46

BobbleHatsRule · 17/04/2025 02:56

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!

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

parababe · 17/04/2025 06:38

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

AmusedGoose · 17/04/2025 03:02

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

BobbleHatsRule · 17/04/2025 02:56

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!