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Is my MRI imaging consistent with Intracranial Hypotension (CSF leak)?

I've been dealing with an aggressive radiologist who doesn't know about CSF leaks and several times he refused to administer Gadolinium contrast, which resulted in me having multiple redundant MRI scans which showed nothing, followed by useless migraine related prescriptions.

He's argued with a locum neurologist (who strongly suspected a CSF leak) saying that he doesn't understand the need for Gadolinium contrast and that Gadolinium is harmful because it stays in the body forever.

I asked him if I could see my MRI (with contrast) images and he told me I'd need to pay money to see them - but it turns out I didn't have to pay at all.

He said my imaging is normal but the ''report'' was 5 sentences and barely a paragraph. Half of it was to do with him saying he didn't understand the need for Gadolinium.

Here are my MRI images. I called up my GP and the neurologist I saw has not seen the images yet, and my GP cannot take a look at the images because GP's are not given access.

Sagittal + Gad - https://freeimage.host/i/sagittalmrigad1.FaZumQ

Axial - https://freeimage.host/i/axialmrigad1.FaZRIV

Coronal - https://freeimage.host/i/coronalmrigad1.FaZ5hB

I would like to know your thoughts on these images. My symptoms get worse when I am upright. I have had symptoms since 2011. It started off with a droning in my right ear that would go away within 20 minutes of lying flat. Up until around 2017, I'd wake up in complete silence, but by evening I'd notice the buzzing/droning/whining getting bad. My other symptoms are thunderclap or ice pick headaches, usually at the back of my head. I also have near constant muscle spasms all over my body that feel like a snake is poking its tail out behind my skin. I'm having trouble remembering things and my processing speed is very slow now. I have a constant dull pressure at the back of my head along with neck stiffness and tingling in my mid spine and my scalp.

All my symptoms used to fully go away after a night's rest but now a long night's rest barely touches my symptoms and my symptoms are getting worse. I am really struggling mentally and physically.
4 Responses
Avatar universal
Are you in the US?  I don't get any of this.  Not sure anyone on here can read an MRI, but if you don't trust the guy doing the tests, why keep getting tests from the same place?  You can get an MRI all over the place if you are in the US at least.  I also have no idea why a GP wouldn't have access to an MRI, but most of them wouldn't be able to do much with one as they don't specialize in anything, they are generalists who do a bit of everything.  They can read one probably.  I do have to say, specialists don't always agree with the conclusions of a radiologist, and if a doc orders an MRI with contrast, that's what you get.  So a lot of this is confusing, as radiologists read them and interpret them but don't prescribe them.  
Avatar universal
I'm not a medical professional, but I have looked at lots of scans of people with CSF leaks. There is no brain sag into the foramen magnum, like you see here: https://spinalcsfleak.org/wp-content/uploads/2020/02/cranial-MRI-pre-post-800x450.png

While your symptoms do sound very much like a CSF leak, upper cervical instability can cause the same symptoms. I would really look into that as a possibility. Atlas orthogonal is an amazingly helpful (and noninvasive) procedure to correct that.
Avatar universal
Go to another radiologist.
Avatar universal
Hi @Zoolnotik. Did you ever get further with this? I’m in the process of getting evaluated for a CSF leak and first step us you need to see an ENT (bring your MRIs) to see if they can do a sinus CT scan. That along with nasal dripping testing for b-transferrin can help diagnose it rule out a cranial CSF leak.
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