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Old 01-15-2020, 11:32 AM #1
mully024 mully024 is offline
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Join Date: Jan 2020
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mully024 mully024 is offline
Newly Joined
Join Date: Jan 2020
Posts: 1
Default Officially diagnosed with a CSF leak yesterday, looking for insight

o I was officially diagnosed with a leak yesterday. I had suspected it based off my symptoms (which I have been dealing with for 10 years and had seen 60+ doctors for), but I had never heard of CSF leak until about 4 months ago. I reached out to Dr. S at Cedar and he referred me to someone local here in Boston. They did a special sequence full spinal MRI and found the extradural pooling pretty clearly spanning 6 ‘segments’ in the upper thoracic/cervicothoracic junction.

I am honestly a bit in shock, wasn’t really expecting them to find it right off the bat. They think it is a ‘slow steady leak’ based off my symptoms and other imaging. I was presented with a couple options and I was hoping to get some insights from people who have gone through this.

Option 1: Do a patch in that general area and see what happens. However, they think the leak is in the front of the spine and because of this not super confident a general patch will be curative. I am terrified of getting the patch as you can’t be under, they want me awake to let them know when I start feeling significant pressure as this is how they gauge when to stop. I’d like to hear more about peoples experience with the patch?

Option 2: Do a digital subtraction myelogram, to hopefully pinpoint the exact source of the leak (though not guaranteed). This would allow them to get the needle as close as possible to the leak site which they said would greatly increase the success rate. It would also be necessary if they determine surgery is required per the NS. My concern with this are multiple...its under general anesthesia, they need to stop the breathing in order to do, I’ve never had a lumbar puncture and am worried about the after effects and creating another hole, and I am concerned about long term side effects from the injection dye… So I wanted to see if anyone has had this done?

Thank you in advance.
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csf, diagnosed, effects, leak, patch

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