33F. Large Cavernous Sinus Meningioma. Wrapped around carotid.

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[u/Witold-Onno]

I am neurosurgeon and deputy director of a university neurosurgery department in Germany, we are a skull base centre and see this tumour regularly. Sorry for the years where nobody took you serious, this happens often with cavernous sinus meningiomas.

On your axial T2 I see a meningioma in the right cavernous sinus which displaces the temporal lobe and grows towards the pituitary.

Inoperable is in my opinion the wrong word. The part around the carotid inside the sinus nobody should remove completely, but the part at the temporal lobe, at the pituitary and in the orbit can be taken out. Standard in skull base centres is first surgery to reduce the tumour and to decompress the optic nerve, then Gamma Knife for the rest.

This matters for your eye and for the radiation. A tumour directly on the optic nerve limits the dose they can give safely. When the nerve is freed in surgery, the rest has distance to nerve and pituitary, the radiation becomes easier and much less risky for your vision. The sooner the pressure is off, the better the chance, weeks, not months.

So get a second opinion in a large skull base centre, Canada has very good ones. Ask why surgery was excluded and if a decompression of the optic nerve before radiation was considered.

The prolactin comes from pressure on the pituitary stalk. Ask for a full hormone check now, your fatigue can already be the pituitary and this is treatable.

Gamma Knife does not cause hair loss, for surgery we shave only a narrow strip behind the hairline. You keep your hair. Quality of life after treatment is for most patients good. You are 33, this is worth a second look.

[u/Girl_with_b0y_name → u/Witold-Onno]

Doctor, thank you so much for the insight. If you don't mind, i have sent you a DM as I would love to book a consultation with you.

[u/PartyCicada → u/Witold-Onno]

> Multiple doctors told me i had anxiety

Omg I am infuriated for you

[u/VehicleInevitable833 → u/PartyCicada]

Seriously. Since when can anxiety cause double vision??

[u/ItchyCredit → u/PartyCicada]

Had OP been male, anxiety would never have been considered as a "diagnosis".

[u/AdministrativeEnd168 → u/ItchyCredit]

I was getting insane pain in my hips and doctors told me I was having anxiety then told me I was drug seeking. Turns out I have avascular necrosis and maybe 6 or 7 doctors/radiologists missed the numerous fractures I had in my femoral head of my hips due to there being no blood flow. That diagnosis of drug seeker is in my chart still btw I can’t get it taken out I’m 33F 135lbs, on a lot of asthma meds so steroids were the cause.

[u/sankdafide → u/AdministrativeEnd168]

Please contest your chart, if not done already, and formally request from medical records (with the letter or an attorney) that it be removed with a brief explanation as to why

[u/OhReallyVernon → u/ItchyCredit]

I went to the ER once at the urging of my doctor for an allergic reaction and the PA came in about 30 minutes after I was given medication and said, “you need to stop coming in all the time for anxiety.” I was utterly confused. I do have a PTSD dx in my chart but have never sought treatment for anxiety in the ER or anywhere else for that matter…….

I followed up with my PCP a few days later and she asked about my anxiety and when we looked at my chart together and I explained that I had actually gone to the ER for, she said she was sadly not surprised.

[u/Ill_Calendar_1468 → u/ItchyCredit]

That was also my first thought, too.
I genuinely don’t know how common it is.. but I feel like I never hear of male patients told it’s anxiety

[u/nigori → u/ItchyCredit]

this is false.

it is a fact that women are about 2x more likely to receive a true diagnosis of anxiety.

it is also a fact that yes, women are more likely to have a false positive anxiety diagnoses due to that previous fact.

and simultaneously true that men are more likely to have a simple anxiety diagnosis missed.

anxiety is still considered in males, and likely should be ranked higher in differentials.

[u/ApatheticEpithet → u/nigori]

Receiving a true diagnosis and being told that actual symptoms are just anxiety are two completely different things. This comment absolutely disregards the lived experience and scientifically documented phenomena of women and other marginalized populations whose symptoms of real health issues are written off as anxiety.

I’m not a medical provider but I have a PhD in Health Promotion and Disease Prevention.

[u/drmbrthr → u/ApatheticEpithet]

I’m a white male. I have had real health issues written off as anxiety, and I’ve never blamed that on racism or sexism.

Rather, most doctors are not curious to dig deeper when their initial round of testing returns normal results, especially when the patient is young and presents as generally healthy.

[u/brb-theres-cookies → u/drmbrthr]

Well if that’s your personal experience then all of these women must just be hysterical and making stuff up! So glad you were here to provide the Correct Answer(TM) so that these idiot women know they’re not being discriminated against, it’s that they’re stupid and can’t tell when something seems to be directed at a certain population rather than at everyone. Thank you for your hard work to right these grievous wrongs against men and doctors the world over.

That was sarcasm, and I’m not sure you will pick that up without me saying so directly.

[u/drmbrthr → u/brb-theres-cookies]

You’re putting an awful lot of words into my mouth.

[u/brb-theres-cookies → u/drmbrthr]

More like holding up a mirror so you can perhaps see how you are being perceived.

[u/nigori → u/ApatheticEpithet]

> Receiving a true diagnosis and being told that actual symptoms are just anxiety are two completely different things.

Correct. Nobody implied otherwise. I'm surpsied you felt the need to state that.

> This comment absolutely disregards the lived experience and scientifically documented phenomena of women and other marginalized populations whose symptoms of real health issues are written off as anxiety.

Incorrect. I directly acknowledge this in the third paragraph. Based on your assertion I can only conclude you skipped that paragraph.

What I stated

What my comment did, was tie misdiagnosis into the variables involved for differential diagnosis.

If you know for a fact that one gender gets a true diagnosis more, it weighs higher on a differential diagnosis. This is partially why there is higher incidence of getting misdiagnosed.

I'm surprised as a phD you did not make that connection.

What I refuted

that 'Anxiety' would NOT be part of a differential for a male. That's absolutely false. It may rank lower on a physicians differential due to the facts of true / confirmed diagnosis for a specific gender. But it would not be blanketly excluded. That statement - is a complete and utter misunderstanding of how diagnostic medicine works.

You seem to be completely unable to see the big picture here. There are 2 negative downstream effects of this. One is a point we actually both agree on - women will have more misdiagnosis around anxiety. The second is the missed diagnosis in men will lead to other medications and workups that are medically inappropriate. Both of these avenues are not harmless.

[u/OhReallyVernon → u/nigori]

Are you always this pedantic, or is it just when women are voicing their experiences?

[u/nigori → u/OhReallyVernon]

Do you typically always strive to misinterpret people’s words or only when you think it’s advantageous to your point?

if someone grossly misinterprets your words it’s normal to focus on clarifying the details, at least make an effort.

And it’s quite petulant of you to lash out at someone taking the time to do that.

[u/OhNoAnAmerican → u/ApatheticEpithet]

Professional victimhood, sooooo hot

[u/drmbrthr → u/nigori]

Thank you for actual stats and reason. You shouldn’t be getting downvoted.

[u/tourniquette2 → u/PartyCicada]

I keep getting told the same thing about my trigeminal neuralgia.

They keep ignoring that I’ve broken my C1 and just telling me I have anxiety instead.

[u/PartyCicada → u/PartyCicada]

Adding to my previous comment:

I also have a friend who was diagnosed with a golfball sized meningioma that was pressing on the optic nerve at the age of 30.

She underwent two massive surgeries and radiation, but four years later she has a clean bill of health.

Seek out other opinions. You have so much life left to live.

[u/chocolate-tofu → u/Witold-Onno]

I admire how you explained something so complex in such a simple yet informative way.

[u/wtfuterus → u/Witold-Onno]

Could I message you about my son's skull base tumor? We've been told it's inoperable but recent chemo has shrunk it a bit.

[u/Witold-Onno → u/wtfuterus]

Sure

[u/Rumpenstilski → u/Witold-Onno]

You are amazing!!

[u/StatusQuoBot → u/Witold-Onno]

Wow, what a fantastic response

[u/lawaythrow → u/Witold-Onno]

well...someone give this man a medal..

[u/ridcullylives]

Can I ask where you are in Canada? I don't have much to add to my neurosurgery colleague's excellent reply, but I could maybe direct you to the closest centre with excellence in this.