Brain tumour or csf leak or IIH: I’ve posted... - Anxiety Support

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Brain tumour or csf leak or IIH

Mellaw1511 profile image
6 Replies

I’ve posted quite a bit but I’ve still got real bad anxiety over my current situation. After 3 months of head pressure constantly on top of my head I had a CT scan which showed an empty sella and a sphenoid sinus issue. I’m seeing an endocrinologist a neurosurgeon and an ENT and all 3 say it could be this or that. This headband feeling is so disabling though from the minute I wake up. It doesn’t hurt and I don’t have what I would describe as a headache but any human would know the feeling just isn’t normal. In fact over the last 3 months it has gotten worse to the point I’m scared to get up and walk around I feel so disorientated. It burns inside my head too and I’m just convinced that even though I’ve had a CT it’s got to be a brain tumour or an unruptured aneurysm and the doctors don’t say anything to reassure me it’s not. I’ve only had the CT and then an mri of my pituitary gland

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Agora1 profile image
Agora1

Hi Mellaw....At one time, I too experienced what wasn't a headache but pressureinside my skull. I will admit that at the time I was extremely anxious and so most

doctors focused on that. I say doctors because I had a team of specialists that

I'd go to in trying to find the answers why I felt this way.

I too had an MRI of my brain. They didn't really find anything. There were times

that I would not only feel pressure but as if there was fluid jousting around in my head.

It was a Rheumatologist who suggested physical therapy which helped release the

lymphatic fluid that had built pressure in my head due to my intense muscle stress.

I'm only relaying my experience because it doesn't always have to be a catastrophic

issue. What do the doctors want to do as the next step in finding you an answer?

I wish you well. Try using positive thinking that you are in good hands and will

be taken care of. :) xx

Sam1109 profile image
Sam1109 in reply to Agora1

Your description sounds exactly like what I feel. Please let me know a few things. Did the feeling come and go or was it there all the time? How is it now? Did physical therapy work? And what kind of muscle stress was it and which muscles?

Mellaw1511 profile image
Mellaw1511 in reply to Agora1

Thank you yes I do kno my tight neck muscles don’t help but it’s from the minute I open my eyes. Plus these issues that they’ve found on the ct scan are rare so it’s made me more anxious

Ironj profile image
Ironj

The CT would definitely detect a brain tumor. Was a CTA done in addition to the CT scan. If the CTA (contrast ) was done it would have picked up on any blood vessels ready to become an aneurysm.

Do you ever have clear liquid run out of your nose like water ?

I don’t think all the Drs would keep you in the Dark if it were bad. I think there just keeping an eye on things.

I just had a CTA done a month ago because of very bad vertigo. I keep having episodes. I can’t walk steady and I feel dizzy. The Drs say it’s just Vertigo. Have you taken Dramamine or any meds for dizziness ?

Mellaw1511 profile image
Mellaw1511 in reply to Ironj

No I only had a ct without contrast but then I had a MRI with contrast on my pituitary gland. I’m not on any meds at all but I’m hoping these next few apt’s will shed more light on what it could be. Suggesting maybe a csf leak or intacranial hypertension. I don’t really have water coming out nose or ears though

Sam1109 profile image
Sam1109

I have this feeling in my head too. Lot of times I have to lie down. Sitting makes me feel like I might faint. It is not there all the time though. No idea what causes it.

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