[atmanthedog]

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.

[s5300]

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.

[atmanthedog]

I was 30 when all of this transpired initally (I had my surgery at the beginning of last September). I actually live quite far away from Cedars, in Illinois, but forwarded my local medical records to Dr. Schievink after a lot of online research. Post-surgery I stayed with a friend from college who lives in Santa Monica, which was an enormous help, but it also wouldn't be so bad to post up in a hotel. From initial inquiries to the surgery took ~2-3 months, which surprised me.

I haven't interacted with Dr. Carroll, but my general impression of Dr. Schievink was very positive. Everyone in the whole process at Cedars was awesome. That said, I do still have some lingering issues recently that superficially seem spine-related, despite being assured that my saga was over. It has definitely been an improvement, though, relative to pre-surgery.

I'm sorry to hear to you're going through all of this, but there really is light at the end of the tunnel, and I hope you get there sooner than later.

If you have other questions, you can email me at my HN handle @ gmail and I will try to help as I can.