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Cerebrospinal Fluid Leaks

All indented text is patient testimonials, unless stated otherwise.

There is no blood inside the skull (past the "brain blood barrier"); there is cerebrospinal fluid (CSF) instead, which is clear unlike blood.  After AN surgeory, some patients develop CSF leaks.  These can develop while still in the hospital, or even weeks or months after the surgery. CSF leaks need to be reported to your surgeon right away, as it indicates that the surgery site is not healing properly. 

Usually, CSF leaks manifest themselves as clear nasal fluid. 

When I had surgery, my surgeon said if my left nostril was dripping any fluid out, or I had a runny nose on the left side, to get back to him immediately. (I had AN surgery on the left side). This is not something to mess with.

Others develop a CSF leak directly at the site of the surgery scar, sometimes weeks later:  

I had an AN removed...  I was fine until I started having some drainage from a scab which formed over the lower part of the incision.  [It turned out] I had a CSF leak (clear liquid with a little pink) and the doctors didn't recognize it because it had been weeks after the surgery.  As a result of that leak I contracted meningitis and a staph infection, which hospitalized me for a week.

Chemical test strips can be used to determine if the fluid is a CSF leak or not; the strips change color if it is:

Trying not to let the drip escape the nasal cavity, I hunted through my bags for the plastic jar of chemical test strips the nurse gave me in the hospital. I got the drip onto the strip and ... it didn't change color.

Also, post-op meningitus (brain infection) is more likely to occur when there is a CSF leak. If you are having bouts of meningitus, in combination with nasal fluid or scar drainage, it is almost certainly a CSF leak.  This is a risky combination; if your doctor dismisses the meningitus as non-AN-related, get a second opinion without delay!

My nose was running all the time after an AN removal 2 years ago. I’ve had meningitis twice.  The second time, a combination of the meningitis and a nurse overdraining CSF one night caused me to have a sinus thrombosis (blood clot on the brain) and I became hemipalegic.  After IV heparin I seemed to be recovering so I was moved to acute rehab.  After 2 days in acute rehab I had a second thrombosis and a seizure... I spent the next week in neuro intensive care before going back to rehab.  After 5 1/2 weeks of being hospitalized, I was sent home with a walker and spent the next month doing physical therapy 3-5 days a week...  Even my neurosurgeon admits that I am very lucky to still be alive. He has recommended surgery ASAP to pack the ear. He said if I didn’t have the surgery, the next time I might not be so lucky. 

Some leaks are not visible from the outside at all. Radioactive dye can be used to diagnosed these "invisible" leaks:

I had a middle fossa operation last year in April and developed a CSF leak.  MGH injected radioactive dye into my spine to determine if there really was a leak, where it was, and where it was going.

CSF leaks reduce the intracranial CSF pressure which can cause discomfort:

Having lower intracranial CSF pressure seemed to result in some headaches.  If I sat working at my computer I would feel increasingly uncomfortable sometimes behind my eyes and at the base of my head. Hitting pot holes on the road was also very uncomfortable.

They said that I might have a small CSF leak from the puncture which was causing [my severe headaches]. They said that it would heal in time... it sealed up after about a week, but oh-gosh were the headaches deadly. I was fine lying flat out, but when I stood for any period of time my head would throb like mad.

Here are some more patient testimonials about CSF leaks. 

There is about a 20% risk of CSF leaks with translab, 15% with retrosigmoid.  Here is from the Journal of Otolaryngology (Oct 1998):

Postoperative cerebrospinal fluid (CSF) leak  is a serious complication of [Acoustic Neuroma] surgery. In the current literature, CSF leak rates vary from 8.1 to 20%. The various options in managing this troublesome complication include conservative treatment [continuous lumbar cerebrospinal fluid drainage] or invasive surgical repair.

Sometimes, these leaks go away on their own. Others are fixed by having a lumbar shunt to the abdomen. A procedure called a mastoid obliteration is also sometimes used to stop CSF leaks.  It takes a couple of hours and is a relatively major operation:

Once the leak was confirmed and proved to be fairly big, the neurosurgeon and neuro-otologist decided to ablate the mastoid and repack with bone wax and more fat.  The surgery was similar to a trans lab.  That happened [two months after the AN surgery].

There are also surgical techniques that reduce the incidence of CSF leaks in the first place; here is a quote from the medical literature (1991):

Mastoid air cells exposed during craniectomy are skeletonized and packed with bone dust, then covered with Surgicel soaked with Tisseel fibrin glue. The use of this technique has reduced the number of acoustic neurinoma cases requiring secondary mastoidectomy for CSF leakage from 16% to 5%.

You may want to check if your surgeon uses these techniques.

Patient testimonials about CSF leaks

(Mar 22'98) I am a recovering AN patient from Canada. Had my surgery 2/98 and doing excellent. NO complications at all. (May 13'98) Just an update. I have been on here before and have had complications since.... [3 weeks after surgery] I had a CSF (cerebral spinal fluid) leak from my nose. I ended up with more surgery to repair tumor site and this time I was not so lucky in the complication dept.  I have one-sided facial paralysis. They say 3/6 months I should be back to normal.

(4/98) In June of 96 I had a 3.5 cm Acoustic Neuroma removed. One month later I had to return to the hospital as I had leaking cerbal fluid and I had become infected with a case of meningitis. I am 62 and in good physical condition and haven't returned to work yet.

I had a 1.7cm right sided AN removed 10/98... All went gloriously well (no facial paralysis, some minimal hearing left) untill I contracted bacterial meningitis 10 days post op. I had a spinal fluid leak at the incision site at the time of re-admission, but I do not know which came 1st, the leak or the infection. The menigitis has knocked me for a loop. I am very weakened now. My headaches are debilitating.

(4/97) I had AN surgery in 1986, and in 1992 I developed a CF leak which led to menengitis. Since then I have undergone six surgeries to stop the CF breakthrough. I also had a surgery to put in a shunt in August 96, with it being removed December 96. I have just found out I have another CF leak and have to go in and get another surgery done.

Alan had surgery about 3 weeks ago and has complications. He has cerebral spinal fluid leaks which the shunt didn't stop.

Had AN removed 6/7/96. CSF leak repaired 6/17/96. Thought all was going well, then developed infection at surgical site leaking CFS. Another revision on 7/19/96.

I had surgery 7/97 to remove a 1.5 cm AN... I had a second surgery in 12/97 to repair a cerebrospinal fluid leak.

My operation to stop a CSF leak was 2 1/2 hours long. They didn't go in the same incision as the prior operation. Instead, they cut right behind the ear (in the crease), pulled it forward, and opened it up. They took out ossicles, ear drum, etc and stuffed the ear with wax and fat cells taken from my abdomen...  They sliced a piece of skin from the botton of the canal and flipped it up to make an ear drum. It feels just like one although this one might even be stronger. I left the hospital after two days. My ear was bandaged for a week and then I took off the bandages. I did need some strong Ibuprofen for some "electric-like" pain shooting through the ear for about 10 days. Then, it went away. The doctor mentioned the "Dumbo" effect. Sometimes, the ear swells out and stays that way for a few months. I still cannot sleep on that side of my head, but it's starting to tolerate more and more pressure. I went to work after 8 weeks, part time.

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Last Edited: Monday, November 17, 2003