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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
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faerietales · 19/04/2025 08:16

HoppingPavlova · 19/04/2025 06:18

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.

HoppingPavlova · 19/04/2025 06:18

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.

Nextdoor55 · 18/04/2025 09:57

@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?

Nextdoor55 · 18/04/2025 09:46

Takethetrainnezttime · 18/04/2025 09:32

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.

Takethetrainnezttime · 18/04/2025 09:32

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.

LetMeGoogleThat · 18/04/2025 09:02

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.

PremiumD · 18/04/2025 08:19

Smallmercies · 18/04/2025 06:43

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.

Smallmercies · 18/04/2025 06:43

PremiumD · 18/04/2025 04:31

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

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

IHeartHalloumi · 18/04/2025 06:05

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.

springintoaction321 · 18/04/2025 05:51

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

PremiumD · 18/04/2025 04:31

Smallmercies · 17/04/2025 08:26

A very common feature of health anxiety is believing that doctors are lying or deliberately withholding information.

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

PremiumD · 18/04/2025 04:29

Smallmercies · 17/04/2025 08:07

Advocating for oneself is best done in a medical setting, not on Mumsnet. People normally bring their anxieties here precisely because they're unable to accept the reassurance offered by their doctors.

Not necessarily and often not at all.

PremiumD · 18/04/2025 04:27

Smallmercies · 17/04/2025 16:07

Because so many people said stupid things 🙄

When that happens to me, I wonder if I’m the common denominator.

ispecialiseinthis · 17/04/2025 18:22

TigerRag · 17/04/2025 17:52

Incidental finding doesn't always mean there's no symptoms. I've got 2 archanoid cysts. Every GP and neurologist has told me they cause no problems. But no one can explain why (ignoring when I injured my head and a 2 week headache followed) I'm getting migraine. It's most odd or not that I know so many people with the same diagnosis and symptoms and we've all be told they cause no symptoms

i was once offered talking therapy because "your MRI scan is normal. No medication works so you're clearly imaging it". Except I can't take a lot of the medication they usually prescribe due to having asthma.

My MRI as I found out several years later isn't "normal" part of my brain hasn't developed how it should do

Nowhere did I say incidental findings were always normal. I said they are very very common.
I said cysts are normal in many organs (not ALL organs).

GPs and neurologists are not going to be able to tell you that your arachnoid cyst is or isn’t actually one.
In the majority, arachnoid cysts do not cause symptoms but they can do. Whether they are genuinely the cause of symptoms can be difficult to determine.

Smallmercies · 17/04/2025 18:15

Bigfatsunandclouds · 17/04/2025 08:37

OP has had 2 brain scans which shows cysts each time and worrying enough symptoms that she was referred in the first place - what here suggests health anxiety?

You're right, I think OP is much sicker than the doctors realise 😪. I hope she can get another MRI soon.

TigerRag · 17/04/2025 17:52

ispecialiseinthis · 17/04/2025 17:25

OP - maxillary cysts are two-a-penny and do not cause symptoms unless large (even then it’s doubtful) or associated with dental disease.
Likewise pineal cysts.

Incidental findings on scans are very very common. Cysts are a normal finding in many organs.

Incidental finding doesn't always mean there's no symptoms. I've got 2 archanoid cysts. Every GP and neurologist has told me they cause no problems. But no one can explain why (ignoring when I injured my head and a 2 week headache followed) I'm getting migraine. It's most odd or not that I know so many people with the same diagnosis and symptoms and we've all be told they cause no symptoms

i was once offered talking therapy because "your MRI scan is normal. No medication works so you're clearly imaging it". Except I can't take a lot of the medication they usually prescribe due to having asthma.

My MRI as I found out several years later isn't "normal" part of my brain hasn't developed how it should do

Smallmercies · 17/04/2025 17:44

JustsamanthaJayne · 17/04/2025 16:55

I have responded

Yes you have ❤️

Smallmercies · 17/04/2025 17:42

JustsamanthaJayne · 17/04/2025 16:55

Is this a sarcastic response 🤔

No, it's genuine x

ispecialiseinthis · 17/04/2025 17:25

OP - maxillary cysts are two-a-penny and do not cause symptoms unless large (even then it’s doubtful) or associated with dental disease.
Likewise pineal cysts.

Incidental findings on scans are very very common. Cysts are a normal finding in many organs.

JustsamanthaJayne · 17/04/2025 16:55

Smallmercies · 17/04/2025 15:47

Ok, you are definitely ill and the doctors are all wrong. I hope you feel better very soon x

Is this a sarcastic response 🤔

OP posts:
JustsamanthaJayne · 17/04/2025 16:55

Smallmercies · 17/04/2025 16:07

And also OP never responded 😒

I have responded

OP posts:
MistressoftheDarkSide · 17/04/2025 16:52

Smallmercies · 17/04/2025 16:18

And also I've had an Uhudler spritzer which has put me in a very expansive mood 🙃

If I believed in the devil, that saying about idle hands would seem very apt here 🙄

Apparently some people just can't help themselves.

Smallmercies · 17/04/2025 16:18

PremiumD · 17/04/2025 16:03

But you did engage.

And also I've had an Uhudler spritzer which has put me in a very expansive mood 🙃

Smallmercies · 17/04/2025 16:08

PremiumD · 17/04/2025 16:03

But you did engage.

And also I'm on holiday and have lots of time on my hands 😅

Smallmercies · 17/04/2025 16:07

PremiumD · 17/04/2025 16:03

But you did engage.

And also OP never responded 😒