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AIBU?

Posting for traffic cysts and swelling in temporal lobe

16 replies

Nefney14 · 07/10/2018 06:27

Hi I’m posting for traffic and to see if anyone has some positive or even not positives stories about this to help me feel less in the dark.

For over a year I’ve been going back and forth to my GP with episodes of DE Ja Vu type feeling that was waking me up in the night and then giving me periods of absences throughout the day. It was originally diagnosed as migraines without the headache and then they were saying anxiety. I was adamant that I don’t have anxiety and pushed for a referral to a neurologist the GP did refer me but made it clear he thought I was over reacting even putting in the referral that I had self diagnosed using google which wasn’t true.

The neurologist agreed with me that it may be some kind of seizure and sent me for an MRI and eeg this was back in May.

In the mean time I’ve had 2 tonic clinic seizures one at work where they phoned an ambulance and sent me to A&E.

So last Wednesday I get a call at work from the neurology department saying they needed to see me urgently and I needed to go in the same day. They tell me I’ve got 2 cysts and swelling on my temporal lobe and I need an urgent referral to a neuro surgeon. I ask questions like do I need to be worried? Could it be something sinister and she told me that’s for the neuro surgeon to decide. The same day the MRI department called me and said they need to see me urgently for another MRI with contrast.

The next day the neuro surgeons receptionist rings me and says he needs to see me urgently on Tuesday they’ve slotted me in between patients and I absolutely must not miss this appointment.

I have absolutely worked myself into a frenzy I have no idea what is going on. I’m to afraid to google becaus I know exactly what that’s going to say.

Anybody been through similar? Anybody work in neurology that can tell me another reason it could be urgent other than the dreaded? Literally any advice will be appreciated

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lljkk · 07/10/2018 06:36

No experience. My tuppence is:
I think if it was truly "urgent" you'd be in hospital now getting surgery.
Or would already have been prescribed specific medications already.

It would be wrong for anyone on here to diagnose you b/c the number of possibilities are hundreds. Some are pretty pessimistic & some are very possible to fix with straightforward treatment (which could be surgery, still), and some might be fixed with simple medication; the doctors need to tell you for themselves so they can answer your questions, especially about the options.

Sorry you have these worries. I am surprised they haven't already told you what kind of things they could be looking for. Hard to explain when there are hundreds of possible things, I suppose.

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Nefney14 · 07/10/2018 06:46

Thank you
I suppose I do know that and know that nobody could tell me what’s wrong and I won’t know until Tuesday but I don’t even know what the possibilities are they literally wouldn’t tell me anything other than wait for the neuro surgeon.

They have prescribed me medication to stop the seizures.

I know realistically there’s nothing I can do except wait until Tuesday tho I was just having a moment because I couldn’t sleep 🙈

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steppemum · 07/10/2018 06:53

Oh that is rubbish.
On a side note, I get so irritated when GP don't take people seriously.

No experience, just wanted to say it sounds as if now it has kicked in, you are getting seen properly, and good luck for Tuesday.

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Nefney14 · 07/10/2018 06:59

@stepmum me too I honestly think if they’d listened to me in the first place it wouldn’t be as bad as it is now. I have put in a complaint because on my last GP visit he made me feel like an absolute idiot! Hopefully they’ll list to the next person

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WhoWants2Know · 07/10/2018 07:03

I do know someone who was diagnosed with a (huge) cyst on her parietal lobe. It did require urgent surgery to prevent it growing any larger. But as scary as the idea of brain surgery is, it was all carried out quickly and with minimal complications. No long term effects, in her case, at all.

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lljkk · 07/10/2018 07:06

Please do update us when you know more. x
What else are you doing between now & appointment? Can you distract yourself a bit.

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Nefney14 · 07/10/2018 07:17

@iijkk I definitely will update Tuesday, I’m almost 100% sure everything’s fine and I’m going to feel like an idiot for being such a drama queen!

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steppemum · 07/10/2018 07:18

I have to say, I would REALLY want to know why it has taken from May to Oct for the neurologist to look at the results of your first MRI.
There is something not right in there.

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flumpybear · 07/10/2018 07:20

Ok after a quick google (I know nothing about this by the way) I wonder if they're being very insistent because it mentioned some people develop psychosis because if the cyst and where situated - you've mentioned de ja vu already so just wondering if they're making sure you definitely come so they can treat you, because it's clearly not an asymptotic cyst if it's affecting you now.

When I had a large cyst located on my ovary (slightly different of course lol!) I didn't get to go home even to wait for a referral, when they told me what it was, I was a bit scared and upset, was on my own too, and I said 'when will it be likely I'm called in for surgery' the doctor said 'when did you last eat?' .... I burst into tears! It was done the next morning ... would have been that day but there had been a bad trauma case after a car collision so I was shunted .... what I'm trying to say is they don't seem to hang around!!

Good luck and feel pleased they've got you in so it'll all be sorted, drained and you'll feel better soon Thanks

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Nefney14 · 07/10/2018 07:27

@stepmum it wasn’t the neurologist it was the MRI people took that long to send the report. My first tonic clinic seizure was the 28th of September and the report wasn’t available for the doctor in A&E the neurologist was really angry and apologetic about it. I hadn’t chased it because I was due to see the neurologist this month so assumed nothing had shown on the mri and that’s why they hadn’t contacted me. I should have probably put that in my OP so far the neurologist has been amazing it’s been everyone else that’s been a joke

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Nefney14 · 07/10/2018 07:30

@ flumpybear oh god I’m so sorry that must have been really frightening! Glad you’re okay now tho thank you it’s made me feel a bit more positive because at least they’ve let me come home! Xx

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SadieAB9 · 07/10/2018 16:54

I'm not a doctor but in my experience, a cyst is never super serious (in the sense of being life threatening). It might sound weird but in a way, a cyst is what you want to have! (I mean it would be better to have nothing at all of course but there's so many worse things it could be!) Cysts are usually very simple to deal with. My friend had similar and they treated it as very serious because temporal lobe problems can cause blackouts, seizures, serious mood changes/psychosis (I can't remember his name, but that really famous serial killer who climbed to the top of a university bell tower and shot loads of students in the sixties, did it because he had a type of psychosis brought on my a benign temporal lobe tumour! So temporal lobe issues can really mess with you!) Please don't worry too much. As someone with the worst health anxiety, I can imagine how horrific you must be feeling and I truly feel for you! But I really don't think you've got anything too serious to worry about - nothing they can't fix, anyway! And it's probably more just a case of them wanting it sorted urgently before any worse side effects kick in xxx

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Nefney14 · 09/10/2018 18:35

Just a little update
Had my appointment with the neuro surgeon today and it was all pretty positive.
I’ve got a ‘suspicious mass’ in my temporal lobe but it hasn’t grown since my MRI in May which is a really good sign. So for now it’s just monitoring with 3 monthly MRI’s So feeling much better! Thank you everyone for your help x

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lljkk · 09/10/2018 19:21

Sounds good but also so much left unanswered. Thanks for update. Can they help you more with symptoms?

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Nefney14 · 09/10/2018 20:02

I know he did ask me if I had any questions at the time but since I’ve left I’ve thought of 1000 for example I’ve went and had my eyes tested about 3 months back due to constant headaches and pain in my eye I should have asked him if that was connected etc

He told me not to be worried at the moment and to wait for the review in January he said the two things he’s looking at are if the medication controls the seizures and if the mass grows and that each one leads to a different avenue of treatment so he didn’t want to scare me by going through them all today.

He’s also made a referral to a neuropsychologist for January

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lljkk · 09/10/2018 21:12

Write down your questions in your phone so you can ask them next appt.

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