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Would any Drs be able to help?

(7 Posts)
IsItDinnerTimeYet Sat 13-Jan-18 15:16:39

For around a year, my husband has been feeling as he describes, like he has jet lag. He feels a few seconds behind what is going on, like he is in a 'fog' and it is constant and doesn't leave him.

We've done umpteen tests of every description and seen four different neuros, and we've had both CT scan and MRI. Both have been deemed to be fine. At one point he was diagnosed with tension headaches (chronic) and was given a six month course of depakine which he has now finished.

During my 'research' I have stumbled across 'Spontaneous Cerebral Fluid leak' and the reasons I think he has this are:-

- he feels FINE when he wakes up in the morning and is still in bed, the fog comes on as soon as he starts his day and lasts for the rest of the day (ie fine when lying down when fluid is in correct place)

-it wouldn't necessarily show up in any test he has done and is quite rare (?) so could have been missed.

My questions are on the MRI and CT Scan, i'd like to know if the following sentences point to a CSF leak which a neuro may have missed if not looking for that in particular.

CSF is slightly invaginating the pituitary gland
mild prominence of the cortical sulci of the surface of the brain
A vascular branch is noted to the right of the trigeminal nerve but its importance would have to be correlated clinically
Enhancement of the adjacent cervical meninges

These have been done by different Drs/Hospitals (not in the UK) so it is hard to find someone to look at them all and correlate them, AND also listen to me rambling about a CSF leak so I just wondered if there would be a Dr on MN that may know if I am barking up the wrong tree.

Thank you x

IsItDinnerTimeYet Sat 13-Jan-18 15:17:41

sorry i crossed all of those points out by mistake!

IsItDinnerTimeYet Mon 15-Jan-18 14:36:50

Sorry, just giving this a bump up. Could anyone help? thank you...

lyrebird1 Mon 15-Jan-18 20:16:13

Hi, I can't answer any of your specific questions about the scans, but I know of quite a few people who have had CSF leaks (I have a related condition). The orthostatic headaches are a feature. I would recommend seeing a neurosurgeon rather than a neurologist. They tend to have a lot more knowledge of rare conditions and are good at interpreting results.

The Brain and Spine foundation (although UK based) are really good. You can talk to a neuro nurse who can talk through any letters/scans etc to help you understand them better, and provide more information on what a next step would be.

IsItDinnerTimeYet Tue 16-Jan-18 01:47:50

That's really helpful Lyre, thank you. I hope that your condition is ok too. thank you x

Jon66 Sat 20-Jan-18 01:44:03

Sounds very similar to benign intracranial hypotension except the headache was pretty much the whole time. This is where the cerebral fluid doesn't drain.

IsItDinnerTimeYet Sat 20-Jan-18 09:27:26

Thank you both. We had an appointment with a neurosurgeon this morning but he wouldn't see us as he apparently only deals with brain tumours. (Note this is abroad and a paid appointment so we were willing to pay for it just for some advice, but he said no. :/ )

We have an appointment with his neurologist instead but we have seen four including him. This time we will specifically ask re CSF and intracranial hypotension. thanks.

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