CSF leaks?

[Peggy]

Hi,
once again I'm reading (probably too much) and it seems to me that most of the time with surgery people develope a CSF leak,  what are the chances of that happening and if it does how is treated, with another surgery?  you've got to be kidding me,  during surgery aren't there things that doctors can do to prevent that from happening also, it can happen weeks after surgery,  is there something that I could do to prevent it?  Also, on my MRI report is said " there are several small scattered foci of hyperintese signal in the white matter tracts bilaterally consistent with chronic small vessel white matter ischemic disease  if I looked it up correctly, isn't this heart disease?  does anyone know??  Is is over yet?

Peggy

[Betsy]

Hi Peggy,

Before I decided not to have surgery, I questioned my doctors on the topic of csf leaks.  Both Dr Eisenberg (AN guru from the University of Maryland Medical Center) and the two neurosurgeons I've seen at Geisinger have assured me that it's a rare complication (about 5% according to my notes) and they treat it by installing a shunt.  The concern with csf leaks of course is meningitis, which is why it needs to be addressed quickly.  However, Dr E said he had a patient that couldn't get to the hospital for 5 days after her csf leak started, and she was fine.  Some of the folks on this forum have had csf leaks, and they can tell you first hand what it's like and whether or not a particular surgical approach is more likely to cause csf leaks.

Check with your doctor about the MRI report.  I've learned that the doctor who reads the MRI dictates his or her findings, and it's typed up by a medical transcriptionist.  The transcriptionist got it wrong on my first MRI, and said my AN was in my chest!  Now I google everything and make lists of questions for the doctors.  There's no such thing as reading too much!

Betsy

[Jim Scott]

Hi, Peggy:

While I can't really offer any usable information regarding the 'chronic small vessel white matter ischemic disease' that was noted on your MRI report, which I hope was an error, I can tell you that CSF leaks are not necessarily a big problem with AN surgery.  However, to be totally honest, I don't know the actual statistics, so I could be mistaken.  It wouldn't be the first time.

For many years, body fat (your own) was the substance of choice to fill the space the surgeon removes from your skull when performing the microsurgery on your AN but more recently, many surgeons have adopted the use of titanium mesh to fill that space.  My neurosurgeon used it on me. He claimed he's used the mesh instead of body fat for 'years'.  He also stated that he hasn't had a CSF leak for many years, either.  I didn't.  This is something that you have to discuss with your surgeon to get the specifics but I expect that surgeons either use body fat as 'filler' or the titanium mesh and don't alternate one for the other. For what it's worth, I prefer the titanium mesh. 

Jim

[sgerrard]

Ischemia just means "reduced blood supply", not heart disease.

After I was diagnosed, I had an additional test of the hearing nerve brain stem response, which showed good wave forms, better than expected. The lab report suggested that some of my hearing loss might be due to reduced blood flow to the cochlea, or "cochlear ischemia."

My MRI report also noted "one or two focal areas of white matter hyperintensity", later summarized as "minimal nonspecific white matter changes."

It is the job of the head and neck radiologist writing the MRI report to note everything, for the record. I am pretty sure that unless they start increasing in number or size on follow up MRIs, or something like that, they are not cause for concern.

It can sure drive you nuts, though...

Steve

[zjane]

I had Translab on 6/27 for my 2.3 cm right side AN.  They were ready to release me on 6/30 and that very afternoon I had a CSF leak.  I was put on pressure dressing, had additional stitiches. I was release on 7/3 morning and went back to the hospital in the afternoon because I was leaking again.  This time I had a drain put in thru the spine and was in the hospital for 3 more days.  Since I got home I've been fine.  I was told CSF happens to 6% of ppl have surgery and then 25% of which had to be drained and the associate told me in the 8 years of him working with the surgeon he'd only seen 1 person put back in the OR.

[robynabc]

One thing our neurosurgeon told us is that it is much less common with  retromastoid  surgery. 

[Gennysmom]

I was one of the ones with a leak, but my doctor (who does 1-2 a week) quotes his CSF leak rate at 3%, and the general average I've heard is 5-8%.  Just one of the rare ones I guess.  I had a lumbar drain in the hospital for an additional 8 days, no re-opening of the surgical site needed.  I wouldn't worry about it, just know how to recognise it if it happens.  In my case, I tapered off the steriods, and there was still enough swelling to cause CSF pressure, and it leaked through the spongy tissue that we have in our eustacian tubes (it has "air" pockets that the fluid can work it's way through, according to my surgeon).  That's why it can come out your nose.   

 

[TP]

My wound was leaking a clear fluid about 2 weeks after my AN was removed. I went back into the Dr's office and he put in about 3-4 stiches. Then a few days later, I started to get a fever and the fluid started again from my AN area. I was put into the hospital and they scheduled a CSF leak repair surgery. Unfortunately for me I got menigitis and was in the hospital for about 6 days. My dr did NOT do a lumbar drain for that hospital stay and later mentioned he probably should have done one. For me about two weeks later the fluid started again from my incision and I went into my dr's office for more stiches and a few days later back in the hospital due to the incision was leaking a clear fluid again. My dr placed a lumbar drain in my lower back and after two days needed to do a second CSF leak repair. That sugery did the trick and I was in the hospital for about 8 days.

The only reason I could explain to myself why this happened is I've had a couple of other surgeries where I did not heal well initially and had issues with my incision. However, once my incision heals I find that I recover very quickly. 

[leapyrtwins]

I had retrosigmoid surgery and did not have a CSF leak.  From what I understood prior to my surgery, it was a possibility, but a very small one.  I think somewhere in the neighborhood of 1-3%. 

[wwalker]

I sprung a leak approximately one week after surgery, at the point of the incision.  The surgeon put in "bolster" stitches to tighten up the original closure.

I had a big goose egg full of CSF on the back of my head for about two months, that eventually went away.  The Dr.s decided that if it went away in a few months, I would not need a shunt.

No further probllems with CSF leaks.  My doctor quoted the 5% CSF problems statistic before my surgery.

Wayne

[Dantheman]

My Dr.'s put in a lumbar drain the day of my Translab surgery. They were concerned about CSF leaks due to the size of the mastoid bone they removed. I didn't have any CSF issues.

Dan

[Obita]

Hi Peggy:

No CSF leak for me.  Sometimes they just happen.  If you choose surgery, they will tell you all of the can dos and cannot dos.  Can't dos were, if you have to sneeze, let er rip through your mouth.  Don't try and stop it.  Also, no lifting anything over a half gallon of milk and no straining in the bathroom which ain't easy being you will be a wee bit constipated from the surgery and pain meds.  Another good reason to get off of the pain meds as soon as you can.

I will be watching for posts regarding your appointments.  Good luck next week, Kathy