Spontaneous leak article by Dr. Schievink

[jimc]

I saw Dr. Michael Williams at Johns Hopkins yesterday. He runs the hydrocephalus clinic there, and knows a lot about CSF leaks. He's worked with both Dr. Mokri (Mayo Clinic) and Dr. Schievink (Cedars-Sinai) for many years. He gave me a paper copy of a really interesting article by Schievink from the May 17, 2006 issue of JAMA. I tracked it down on the web. To access it, you'll have to create a free guest account for yourself. Start here: http://jama.ama-assn.org/content/vol295/issue19/index.dtl. The full title is Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension.

I found it to be a very good summary article, well worth taking a look at. It covers the etiology of these leaks, talks about the different types of headaches and other symptoms they cause, how they are diagnosed, and how they are treated.

Jim

[GingerLox]

Hi Jim and All..................I was able to access the abstract (summary of the article) without setting up an account at all.............here is the link!

http://jama.ama-assn.org/cgi/content/abstract/295/19/2286

Was Dr. Williams able to help you? I hope so! Let us know!

Thank you Jim
GingerLox

[jimc]

GingerLox, I would definitely recommend creating a free account and getting the whole article. It's got a lot of interesting information in it, particularly about the relationship between connective tissue disorders and persistent CSF leaks.

Dr. Williams was very nice. He spent over an hour with me, hearing the history of my leak, asking questions, examining my enormous pile of MRIs and CT scans, and doing a neurological exam. He believes that the leak in my head is more or less healed, but that I'm now leaking in my spine. My symptoms lately do match those of a spinal leak pretty well. I'm having another MRI on Monday. If it shows sagging of my brain, he'll probably order a CT myelogram.

He explained that with a spinal leak, your skull doesn't have enough CSF to keep your brain floating, and so your brain keeps banging into your skull. It sounds like you're basically getting small concussions over and over.

Our concern is that it seems like I'm going back and forth between spinal and cranial leaks. When my LP shunt was removed, I felt great for a week, then woke up with a head full of CSF, so much so that it was visible behind my eardrum to two ENTs, and also started coming out my nose again. A month later, I felt pretty good again for a couple weeks, but then started having the spinal leak-like symptoms I'm having now. This cycle happened once before. So if they fix my spinal leak, what might happen is that I feel great for a few days, but then the intercranial pressure will increase because I'm no longer leaking CSF out my spine, and my head leak will reopen.

We're thinking that before we try a blood patch to fix the spinal leak, it would be good to at least talk to Dr. Schievink, or perhaps even go to LA to see him.

Jim

[eman]

Jim,

sounds like Dr Williams knows his stuff. If seeing Schievink is out of the way, I wouldn't do it. He'll order a Myelogram. If it shows a leak, they will fix it, if it doesn't, he'll send you on your merry way. The only advantage you may have with him, is he may be able to read the Myelogram images better than others. Then again, you can always just send him the Myelogram images. They have a 2nd opinion option. You can upload the CD images. He's a nice guy and very tight lipped. They have a specific treatment protocol, and won't deviate for any reason. Myelogram is key. It sounds like your spine leak is due to LP? If I were you, get the blood patch first. They are fairly safe and easy to recover from. I'm one of the very few that blood patches don't work on. I have ICH from LPs, but most people with LP leaks do fine with blood patches. So in order to prove I had 1 LP leak, I had 2 myelograms, and possible 2 more leaks now. I am very much worse now. The diagnostics are not worth the risk if you can get the blood patch first. My advice and opinion...

eman

[jimc]

eman, thanks for the first-hand info on Dr. Schievink. It's very helpful. I'm really tired of doctors who seem to just follow a flowchart when diagnosing.

Jim

[GingerLox]

Dear Jim

Do they think that you have a blockage of the arachnoid villa or the exit ventricle channel that gets rid of the spinal fluid for you to continue to spring leaks as soon as the other leak gets patched up?

I don't get headaches with my cranial leak, but prior to my leak I would get frequent headaches. I have wondered if my body has blocked the normal pathway and needs this leak to ease the fluid pressure in my brain.....a psuedo shunt.

GingerLox

[guineapig]

jimc,
don't discount schievink completely. despite his spontaneous colored glasses, he is one of our better hopes for advancement. he is weighted towards a priori diagnosis of spontaneous leaks (over the last decade he has made some good advances in understanding the spontaneous nature of some csf leaks, and therefrom suffers some self-impressed biases towards his own achievements, ie he wants to reinforce them) and as our previous "caller" has warned you, he is not exempt from advising risky (and unjustified in light of case work is not too strong a statement) procedures. but he is at least worth a consultation. that doesn't mean to take his advice! my experience as well as that of others with him has found that procedural decisions are mutual: he has you make a decision with him, he is unique in this characteristic. as i always advise, be your own doctor. that requires self-education in knowledge and understanding even if not in experience, be it on par with an md. even the gods of neurosurgery make mistakes, i mean bad errors in judgment, i mean blunders, i mean catastrophes. this caller, guineapig

[jimc]

Well, it looks like I'm going to see Dr. Schievink, possibly as soon as next week. The doc at Hopkins has convinced me that flying across the country to see him will be worthwhile.

Jim

[guineapig]

Jim,
look into arangements for staying local, for yourself or anyone who accompanies you. i believe cedars has arangements w/ local hotels for patient/family discounts. ask wouter's assistant, cherry. ask her or talk to the front desk receptionist, nice guy, who will inform you of validated parking; otherwise park across the street at the beverly hills mall parking, much less expensive. excuse me, the details of your case don't come to mind, if you might be going the blood patch way, call the Pain Center at Cedars Sinai and ask to talk to Charles Louy, he will perform any patches ordered by wouter. he also might advise you as to approaching any ct-myelograms.

[jimc]

Thanks, guineapig. Cherry was helpful in finding a hotel at a discount.

Jim