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 have no idea, that information was not presented and I’m not going to make assumptions. I’ve personally had MRIs and scans with a wide range of follow-up communication from consultants (from zero communication to very thorough). You seem to be absolutely convinced that OP has no valid concerns, which I can only assume is a projection on your part

You might want to take this fight up with National Association for the Advancement of Colored People, a leading association for anti racism and equal rights …

That sounds awful, but that's one specific person you know. Not everyone. Wanting to know the results of medical tests, including ones that are atypical but clinically insignificant is not unusual or pathological.

Way to miss the point 👉

I guarantee that a patient with health anxiety will not be reassured by a 20 second conversation or even 20 minutes. They will be back wanting further investigation. The new investigations will just validate their angst.

I'm not saying they should be dismissed...not saying they shouldn't be kept informed...not saying they are deliberately presenting for attention, ngealth anxiety needs treating after all physiological and pathological causes have been excluded.

At some point they will have to rationally accept their isn't a physical cause. This is HUGE and hard

Cannot believe some people are suggesting patients shouldn't be told all of their scan findings. Of course they should! If there's an incidental finding the best course of action is to inform and educate and reassure. "We have also found xyz however this is the diagnosis, you don't need any treatment and it will go away on its own" or whatever they need to say.
Whatever the finding is could be relevant to other symptoms, or could be necessary to know for future. In this case the OP is also having sinus issues - it's just not what the scan was for. They are wrong not to inform the patient of the entirety of her results.
Education, a full explanation and reassurance helps health anxiety and would . Hiding things is just going to cause the patient to be even more anxious and ultimately less trusting of any future NHS results, probably increasing their anxiety.

I think people here are being really mean, a cyst on the brain or near the brain is not the same as a cyst in the arm or leg in terms of concern. If it grows it can press on many things and cause serious issues, can pps honestly say if a cyst was found on their brain (or near) the brain in conjunction with neurological symptoms they wouldn't be worried?

OP I would contact your GP and ask them to explain the findings to reassure you.

I had to have a full body scan due to suspected pagets. It identified a.type of cyst in my liver. It could have alarmed me but I looked it up. It's congenital and incidental and of no concern. The Consultant didn't mention it and I didn't discuss it. Due to the incident below I now insist on receiving full reports relating to all investigations before I attend follow up appointments.

I have osteoporosis and in 2016 badly wedged the L1. A few years ago I had an accident resulting in heavy impact. The pain in my back was identical to that in 2016. I had also broken my arm which needed surgery. The junior Dr in A&E dismissed my back concerns and initially refused a back XRay. After my back was XRayed she told me that there were no new breaks despite the XRay showing fractures to the L1 and T12 and the fact she was vlcategorically told only the L1 had previously broken. When the XRay was reported by radiology this noted old fractures to L1 and T12. My GP therefore dismissed my concerns about severe pain and that an error had arisen. She handed me the report which I looked at later.

A private MRI confirmed the T12 was recently broken. Privately.

Nobody died, but the error did cause a 6 month delay to optimal osteoporosis treatment being delivered.

For all those being so dismissive of the op, I would venture that the system is far from perfect and errors do happen alongside spectacularly poor communication.

@JustsamanthaJayne all medical information is your personal data. You are entitled to it and all patients are entitled to competent communication and interpretation to ensure optimal care. It is not the right of health professionals to decide what can be shares where capacity prevails. It's your body and your health and you can and should own them.

This - worded much better than me!

Yes agree one example. I want to know the outcomes of my tests and health makes me anxious. Ive planned my funeral whilst waiting for a biopsy that I didnt need but thought I did....several times.

Health is after all key to living well. But health anxiety is a massive issue.... not just my friend. Its also hard to address and establish amongst genuine health concerns. It's a problem for many but admitting it might be health anxiety or considering it isn't wrong.

This. I worry about the lack of compassion and empathy from those who jump immediately to “she has health anxiety and therefore nothing she worries about is valid”. The cynical part of me thinks these replies are from burnt out NHS staff who are experiencing compassion fatigue and protecting their feelings on to their patients.

I'm a doctor who spends a fair amount of time going through scans with patient.

Scan reports are very long and almost every patient will have at least one incidental, but harmless finding.

I suppose we get so used to seeing reports with liver cysts for example, that we forget this could be worrying to the patient. It is not a case of intentionally withholding information. Why would we do that?

Thanks for the reminder to acknowledge these with the patient.

I tend to agree with you regarding sharing all results. What I think needs to accompany this is a consistent expectation of patients that incidental findings do not need extrapolating to "serious"

Increased information could help this as more people would validate the fact that it is insignificant

I'm sure you're right, they won't be. But it also doesn't seem fair to assume that's the case about a poster, given the lack of any other information.

I will say, as someone who's been through it, and thankfully eventually got a diagnosis, having unexplained symptoms can cause health anxiety in an otherwise psychologically healthy person. Doctors should understand that and respond accordingly.

Because sometimes it is a physical cause.

It's not lacking empathy to say that health anxiety isn't going to be alleviated by reassurance. It's just a fact. The OP has had intensive investigations and been offered reassurance, but is unable to benefit from it.

Ignore the ignorant comments trying to insinuate you have health anxiety.

There are many incompetent medical staff. My ex was a doctor and used to hear some horror stories.

I was once accused of having health anxiety by a trainee GP years ago. This was after they’d discovered a large ovarian cyst which they believed could to be cancerous (they had also told me it was much smaller than what was actually recorded on the initial ultrasound report).

Ended up going to another A&E as I could barely walk. It had ended up rupturing and twisting around my ovary. Was rushed in to surgery.

Sorry you're going through this OP. From now on request a copy of any ultrasound/mri scans and medical reports. Take them to any future appointments with consultants. Hope you get sorted x

That is what every single person with health anxiety thinks - that there is some sinister underlying cause that the doctors are unable or unwilling to identify.

The point was because YOU believe terms are “bad” or “outdated” or “offensive” doesn’t mean they are.

https://www.mumsnet.com/talk/am_i_being_unreasonable/5135237-to-be-worried-about-this-even-though-doctors-say-no-action-needed

OP, is this you?

Cannot believe some people are suggesting patients shouldn't be told all of their scan findings.

If Doctors’ were to tell people about every single finding in every single test or scan, wait times would be ten times longer than they already are. Not everything on a scan is abnormal or needs to be explained or looked into.

There’s a reason you need medical training to do scans and to interpret the results.

And sometimes they're right.

This. And not only does the NHS suck, our private system sucks as well. I am not talking medical knowledge or professionalism, I am talking insane methodology or lack thereof. A friend is a medical secretary in one of the private hospital chains, where desperate and not rich people (they also sell payment plans to pay for the simplest scans at an incredibly high interest rate) come when they can't get seen for weeks on the NHS. So it goes this way - first you have to see a doctor for a scan referral - it is around £300, then there is a scan (you have to wait for some time, it is usually booked up quite a lot), which can be £240 - to thousands. Then the scan gets 'written up' by radiologists (who are not present all the time in the private hospital, so there is a wait) and emailed to the referring doctor. Then the referring doctor (not in the private hospital all the time, only probably 2 days a week, so there is a wait) dictates a letter and it gets sent to the secretaries to type up. The letter is being typed up (there is no specific consultant-related typist to expedite, it is a typing pool where all secretaries type all specialties, so currently they are typing letters from end of March). The typed up letter is then emailed to the consultant, who is not present in the private hospital all week, so the typed up letter is waiting in the consultant's inbox until it is the consultant's day in the private hospital. The consultant then OKs the letter and secretaries send it to !!!!! the GP of the patient, not the patient themselves!!!!! After that my friend says they get loads of phone calls from patients, to which they reply - so sorry, we sent the letter to your GP last week or 10 days ago or suchlike and we can't disclose it to you on the telephone, please contact your GP. To say that I was shocked when I found this methodology out, is to say nothing. I thought private was amazing until my friend explained things to me.

Oh bore off. People reclaiming slurs as a means of empowerment is not the same as ignorant people using outdated terms because they can't be bothered to educate themselves. But you know this, you just want to be contrary.

See OP's previous post. She is not going to be reassured by any number of investigations.

I wonder how many women are labelled with health anxiety whilst suffering and unable to access treatment because of this. My DM was labelled a nuisance with pain in her leg years ago, turned out to be a rare bone eating tumour which would have been found sooner if the GP had sent her for an X-ray. He didn't, he accused her of trying to get out of work, refused any treatment and said she was anxious.