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Finally had the consultation with the ENT nose guy. After yet another MRI he is going to operate next week. The MRI does not show any CSF leak (none of mine ever have - even the one a few days before a surgically confirmed leak), however one of my problems is with the skull base. 

The skull base is a bit of a surgical battleground between various groups of neurosurgeons and different factions of ENT surgeons. Even though the problems are in basically the same bone and are a few centimeters apart the surgery is done a different way (endoscopic rather than microscopic) by different surgical teams and, in my case, in a different site of the hospital.

For those with classic CSF leak symptoms (including POTS) the surgeon (specialist rhino skull base) said some interesting stuff. Firstly that I have a definite problem visible on the cone beam (type of CT scan) that is not visible at all on the MRI. In these cases the scanner is almost always correct and the MRI is a false negative, he is more than willing to discard the MRI as it misses smaller or intermittent leaks. Secondly, with my symptoms he would be absolutely astounded if there was not a leak, so seeing as it is not fixing itself he will try to repair the damage.

Notwithstanding the other neuro problems (which may be caused by other stuff), hopefully this sorts the continual headaches (started as really orthostatic, over the years (!) have become constant with orthostatic worsening). 

 

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@GasconAlex - best wishes and good luck for the surgery!!!! I hope this will finally give you relief!!!!

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Good luck, please do let us know how you fare with the surgery!

I too investigated CSF leaks and was disappointed not to have a treatable cause. Orthostatic headaches really are rotten!

B xxx

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@bombsh3ll 

I know you have the headaches too, I was really surprised at how little faith in the MRI he had compared to the CT scans - normally it's the reverse. That said MRI scans have little risk (with the macrocyclic gadolinium contrast) which is why I keep having them, the CT scans (especially the ones I've been having) have the xray risks so I try to minimize the number I have as I have already had a few...

Hopefully I will be released in about 5-7 days, but that's what they said in 2016 when it took 142 days before they were comfortable releasing me from hospital and rehab. At least my kids are a little bit older now so the absences are easier to manage.

 

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I hope your hospital stay is short too!

My MRI with contrast of brain and whole spine was negative, but CSF leak REALLY fits with my symptoms and onset triggered by forceful valsalva. 

I decided not to have a LP for now, but am seeing a specialist in disorders of CSF and venous cerebral outflow next month & having a CT head and neck venogram to check for occlusions, so I will also discuss it with him. 

B xxx

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