csf leak through eyes?

[numbskull]

I had craniotomy in 05 for 11mm anerysm. Clipping was successful, but ended up with complications, fluid retention. It fractured and collapsed my sinuses and I had csf leak out left nostril. By time hit hospital, was in critical condition and had 2nd emergency craniotomy 2 weeks from first. Ended up back in hospital 2 weeks later with blood clots both legs, and meningitis. Went home 2 weeks later with pic line and on coumadin....a risk they said was worth taking even with aneurysm because of severity of blockage. Anyway, August of this year, I started having "fluid" pour out my right eye! And I'm not talking from an eye infection. It was clear and ran constantly 24 hours a day. The more active I was , the worse the leak. My headaches became even more severe, and my energy level almost disappeared all toghether. I saw My family docotor who referred me back to the surgeon who did 2nd surgery. The facility would not let me schedule with him because he was not my "primary" surgeon.....well, I refused to see primary surgeon due to neglect and lack of knowledge of the 2nd surgery because his nurse "omitted" the second surgery from my records. Long story short, I waited an eternity and was scheduled in October with another neurosurgeon in Akron Ohio. I had a cysternogram/myelogram done. During the ct portion, the technichian said "He said dye is coming through her sinuses, he wants more pictures"......whoever the "he" was. Anyway, I ended up having additional films and I had a reaction to the test. I ended up in the emergency department the next day, the fluid continue leaking, and the headach was excrutiating! I ended up vomitting, and thought my head would explode! They just gave me pain meds and sent me home. Well, I was in bed most of the next 2 days and I kept my head at an angle thinking that would help. The next thing, I ended up with thrombophlebitis and clots again. Anyway, the fluid is still leaking out my eye, some mornings I wake up with "water balloons" under my eyes. It seems like my body absorbs the fluid after up for an hour or two. My headaches are daily, some worse than others. T
When I followed up with neurosurgeon in Akron, he said there was "something" showing up in sinuses, but he couldn't help me. He said if the leak from eye is cerebral fluid, can't really do anything until it breaks through and pours out my nose again. I just feel like I'm going crazy!!!! I know the fluid coming out my eye is NOT NORMAL! and I can't even bend over to tie my shoes without the pressure causing pain, dizziness, and nausea. It makes my headaches worse, etc. PLEASE if you have any ideas about this or have heard of it, PLEASE let me know!!!!!!!!!!!! I would appreciate any info!!! THANK YOU!!!!!!!!!!!!

[annelb]

I am sorry you are having such a difficult problem. I found this article on Medscape - you will have to register to read, but registration is free. http://italia.medscape.com/viewarticle/405620_1 Diagnosis and Management of Posttraumatic Oculorrhea


from Neurosurgical Focus
Khalil Salame, M.D., Yoram Segev, M.D., Dan M. Fliss, M.D., Georges E. Ouaknine, M.D., Departments of Neurosurgery, Radiology, and Otolaryngology, Sourasky Medical Center, Sackler, School of Medicine, Tel Aviv University, Tel Aviv, Israel

Abstract and Introduction

Posttraumatic cranio-orbital cerebrospinal fluid (CSF) fistula is very rare. Diagnosis of these fistulas may be difficult, and it is possible that this complication of craniofacial injury is underdiagnosed. Early recognition and adequate treatment is of paramount importance to prevent hazardous complications. The authors report the case of a 20-year-old woman in whom a CSF leak developed through the medial canthus area of her eye after she sustained a mild sports-related injury. Clinical examination and chemical analysis of the fluid led to the correct diagnosis, and the leak was stopped with conservative treatment. It is proposed that a CSF leak through the eye be termed "oculorrhea" as compared with otorrhea and rhinorrhea. The mechanism of the fistula in this patient is discussed, as is the pertinent radiologically demonstrated anatomy and the mechanism of injury. Management and controversies are also discussed.

This article is from Israel - perhaps you could email the authors. I do hope you can find help.
Anne

[Tootsie]

Perhaps you could ask the authors of that paper that Anne posted to recommend someone in the US that would be interested and knowledgable about this condition.

I think you definitely should ask someone, either those authors, or the neurosurgeons that have been involved in your surgeries, to refer you to a large, university based teaching facility, where specialists would find you an interesting and challenging case.

Please let us know how you decide to procede. Life should not be this aggravating when there is a possible solution to the problem. So many times, the folks here at braintalk are literally "stuck" with whatever ails them. You do not qualify...there has to be a resolution to this problem, somewhere. Cheerio.