What Happened to Lee

If this story moves you, and you have the means, consider donating to CSF Leak research at Stanford.

Cerebrospinal Fluid Leaks are something that can completely mimic a large amount of FTD symptoms, and even in the care of utmost professionals, can be near undetectable - and somehow, treatment can be as beautifully simple as a one and done injection... to a hellish guessing game and years of attempts. As Dr. Ian Carrol of Stanford's research has indicated, they seem to be highly misdiagnosed/undiagnosed as well.

I know HN has had posts about CSF Leaks before. I truly believe they're one of the worst things we face in this age that can actually be treated with 100% recovery in some cases. However, for far too many, that really means nothing as they'll be sent to a psych facility, nursing home, or become homeless, and die as a whithered husk of what was once a human before they have the slightest indication of what is actually wrong with them, let alone make their way to one of the few places that truly treat the condition.

How DOES one get diagnosed for this? Is there a test?

I had a CSF leak repaired by Dr. Schievink at Cedars-Sinai. My diagnosis happened after I had an acute attack of intracranial hypotension shortly following a long and bumpy session of riding mowing. This attack involved a 'worst headache of my life' that was somewhat relieved by being horizontal. Getting to the hospital seemed too painful, so I stuck it out at home and the headache went away. A couple days later I developed a left sixth cranial nerve palsy, which persisted for around two weeks before I finally went to the ER. After a few days in the hospital and tons and tons of tests for infections, MRIs, lumbar punctures, etc, they decided that I had idiopathic hypertrophic pachymeningitis. That was the working diagnosis for about a week, when my neurologist called me back and told me that they thought they had found CSF leaked into the spinal canal, and so they believed I had a CSF leak.

So, the short answer is that diagnosis will be difficult, and there isn't really a test, but MRI with gadolinium contrast will show enhancement of the dura, and hopefully someone looking at it can see a leak if it is obvious. There are also cases of leaks being caused by a venous fistula, which does not image well.

For what it's worth, I had back-of-head-and-neck headaches intermittently for a while before this, most notably when riding rollercoasters (which I do miss). That is the only long term subtle 'sign' I can remember.

Hope this helps.

Edit: I should also probably add that my case is somewhat weird, caused by a bone malformation in my thoracic spine and difficult to localize with imaging. I had a T1 laminectomy to correct this. However, I'm not sure there are really 'standard' cases, except those that are iatrogenic due to LP or epidural in delivery.

If you don't mind answering, how old were you at the time and what was your proximity to Cedars-Sinai?

I have slight regret with not double booking an appointment with Schievink when he personally called me. For some likely completely unreasonable reason, I feel like Dr. Carroll is a bit better of a choice having had a child with a leak. Had an appt with Carroll a small ways out - was in San Diego for strange reasons at the time - was going to be gone by the date of the appt and have to fly in. Schievink very much thought I had a leak from history and others diagnosis (EDS & POTS) - but thought I may be in better hands with Stanford as I already had an appointment - the main reason I went after Schievink was because I was hoping to be seen before I left SD. For some reason, I made the choice to agree with him and stick with only Carroll.

Anyways... A ton of unfortunate things fell thru with some misscheduling at Stanford, and I'm still on a list to be seen by Carroll :(

While both doctors think it's likely that I have one, which is something they've both said they typically don't say over the phone, either way - I see Dr. Carroll as an absolute hero in these strange times we seem to be living in. As selfish as it sounds, I can only hope that man pioneers research into this for the rest of his life. Being on the receiving end of at least one (possibly two with CSF) medical diagnosis in which there's less quality researchers/surgeons in the Western World than can be counted on one hand, you grow to have very strange ideals as to what's truly important in life.