CSF Leak?

[gunns]

I'm seven months post-op (retrosig) (July 2017).  A couple weeks post-op I had fluid coming from my left nostril (AN side).  I reported this to my surgeon during my post-op follow up visit.  There wasn't much fluid and it was intermittent.  They weren't able to collect and fluid during the visit.  The surgeon decided to take a wait and see approach and advised me to take it easy for a while in hopes that if it was a CSF leak that it would heal on it's own.
 Eventually it stopped.  At that time I knew very little about CSF leaks and just wrote the whole thing off and forgot about it.  A couple months later I started getting a runny nose occasionally.  I wrote it off as a sinus issue.  It got progressively worse a little at a time.  Last Friday while working on our property had to wipe my left nostril every 10 seconds or so.  It was bad enough that I gave up on tissue and had to use paper towels.  The fluid comes out of my left (AN side) and occasionally, 5% of the time, the right side as well.  It never comes out of the right side only.

 I've read up a fair amount about CSF leaks lately.  The fluid is crystal clear and has the same viscosity as tap water.   I've not had the headaches which I was familiar with from back surgeries.  Me eye sight can get a little blurry at times and my depth perception is off.  I still get the wonky headedness and use a cane and my balance is poor at times.

Last Friday, because it was so bad, I called and made an appointment with the ENT that took part in the surgery last year.  I saw him this last Monday.  He doesn't think it's a CSF leak because of fluid in both nostrils (even though it's only that way 5% of the time) and he didn't observe any fluid behind my left eardrum (what?).  Not sure what the eardrum check is all about and forgot to ask.  As with my first check for a possible CSF leak several months ago I wasn't able to get any fluid for testing during the office visit.  It seems to be at it's worst when I'm stressed/working hard which I assume increases the pressure on the CSF.  He did order a CT scan so it's wait and see for now.

I've heard about using glucose urine test strips to check for CSF leaks.  Mucus discharge doesn't have glucose in it and CSF does.  I ordered some today off of Amazon ($17.00) and they should be here this Friday.  It'll be interesting to see how that test turns out while waiting for the CT.

As we all know here on this site this AN thingie is a real life changer and I'm having trouble adjusting to it.  Even at my age, 70 this year, I've been extremely busy.  My life was filled with long years in martial arts, motorcycles (dirt and street) surfing, SCUBA diving, backpacking, some rock climbing and building my own home.  Being idle drives me nuts!

Feel free to provide advice, ask questions or just jump in and poke fun at me.  LOL!!!  Wishing everyone going through this challenge "Fair Winds and a Following Sea!

[tarheelEH]

You can collect the fluid in a sterile (clean) tube and ask doctor send out for testing of Beta-2-Transfferin, it is 100% accurate but takes a week to get the result. I too went to USC have my tumor removed by Dr. F and G last September 2017.  This January I have dripping from AN side's nostril, drop-wise intermittently then progressively to easily collect 4-6 ml a day. I don't have any headache nor other symptoms.  It happened mostly when I am standing; and not really drip down when I bend forward.  Dr. Friedman initially doesn't think it is CSF leak, but I went ahead to have local ENT checked and result came back positive.   Dr. Friedman quickly squeezed me into his OR slot and I flew to San Diego last week to have it repaired. Its an outpatient procedure and I am recuperated home now.  He found the fat grafted shift a little and that fascia/wax they used float in middle ear.   Experienced ENT doctor can easily check middle ear's tympanic membrane, if he sees pulse movements that means the CSF is leaked into behind the ear drum.   Best luck and Hope this help a little.

[gunns]

Thanks for the input.  You mentioned shifting of the fat graft and wax floating in your inner ear.  Did you have an earlier CSF repair - the one last week being the second?

[tarheelEH]

No, this is the first CSF surgery after translab 4-5 months ago. Sorry delay in reply to you, I wasn't on computer a few days.
Doctor really didn't give a reason why the fat shift a bit and many bone fascia float around.  May be everyone's bone structure inside the skull varies or may be the cavity is larger than they realized. They saw lots fluid retains in mastoid air cell.

[gunns]

Not to worry tarheelEH. I don’t check every day either. I have CT scan scheduled in a week or so. So it’s sit tight for now. So they used belly fat and wax to plug the leak?  Is the plug inserted on the brain side of the sinus/bone structure?  Or is it placed on the sinus side?  The former makes more sense to me. Just curious. Thanks for your time guy!!!!

[tarheelEH]

What Dr. Friedman did on me is to reopen the incision site : check titanium plate over the previous mastoid if the leak come from there;  and also do left obliteration of eustachian tube and closure of ear canal (also remove middle ear's ear drum so in the future there is no ear wax produced any more) for CSF leak repair. He said he won't use belly fat for this type repair procedure, instead he used new harvested temporalis fascia and bone wax to pack and closure. He didn't go from the nostril which will close the bottom portion of Eustachian tube, he closed the upper portion of Eustachian tube by going in from the ear.  I didn't have CT scan, so I assume CT results can point to exactly where the leak come from and doctor goes from there.  Hope you indeed don't have this leak and good luck to you up coming scan and appointment.

[gunns]

Wow! That was quite an operation. Do you know how the patch is held in place and what are “temporlias fascia” and “bone wax”?

[tarheelEH]

I don't meant to scare you from previous detail procedure, Gunns!
I really don't know how exactly Doctor patch the leaks.  He mentioned using these two patching materials, I think temporlias muscle fascia is from subcutaneous cartilaginous junction when he circumferentially incised from my middle ear and probably abundant and commonly use for grafting in this canaloplasty procedure.  Bone wax would be some type artificial materials that can make a barrier to stop bleeding from bone surface and may be also use to patch the holes (?) sorry that I didn't ask very detail about the materials, but looks like they are very common material use for surgical patch. I believed they also use these materials when they do AN surgery, just that the main drilled hole is big enough to warrant belly fat graft. 

[Cheryl R]

There are many of us who nose runs similar to your description when just being active or too warm.     Also when eating.        I also did have a CSF leak 2 weeks after one of my surgeries due to NF2.         They feel mine was one of 3 they had who had had translab and a new type of colloidal implant was used.    This is a type of product to help area where tumor was removed.   They went back to the more expensive product previously used.        Mine did do the drip drip when held head over and collected the sample.   It had started running a small amt all the time.        My whole experience and then surgery as went back to neurotologist and was on bed rest for a day before  did the surgery.                    I had the same event where the liquid was sent for the beta 2  transferrin test.         This test was not even done at the Univ of Iowa which is major AN center but sent out.        My surgery was exactly the same as what TarheelEH had done.   There is a name for it and I am not sure what it is for sure.       Sub total petrosal something.             I was kept in for 3 days after done.              There are some drs who will do a lumbar drain for several days after this happens and no surgery.    I am sure the cause for the leak makes a difference.           Every dr has their own protocol.          I do know when back in with the leak had one nurse say they hardly ever see a leak.
  I was not in ICU after the much shorter surgery.                  I also never had headache,fever or salty taste.     One has the possibility of meningitis with this so feel lucky.                     This was back in 2006 but still can have runny noise as said above.     Took me awhile to get over the fear of another leak.
                                             Cheryl R

[tarheelEH]

Thanks Cheryl for sharing your experience.  Now I am three weeks out and feel much better as the suture has absorbed and I can shower without plug the ear anymore.  I was very active but going forward really fear to do any exercise or lifting that increase head pressure.  I don't know when I can resume yoga or weight training without thinking the leak again... I am at North Carolina, but Duke won't be able to do the test, they have to send sample to Mayo Clinic of Minnesota.
Good luck too Gunns and please post your CT result if you would.

[gunns]

Well Monday is the CT day. Just waiting for the insurance, Medicare and VA to figure out who will get stuck with the bill. The leak is getting more active now. This is getting old. Hummmm.... I do have some JB Weld out in the garage. LOL

[gunns]

Well, waited 5 hours at the VA for the CT scan on Wednesday Mar 28. All I was able to get so far was the radiologist report. From what I could make out they couldn’t find a reason for a leak but they were wanting more testing. Lileaking of what ever it is is getting more frequent and pronounced. Still waiting for CT CD. I’ll take both to my doctor and go from there.

I’ve done the brown paper bag test. Put the fluid on the bag and if it’s CSF it should disappear when it dries which is what mine did. Also came across the urine test strip test that diabetics do. My is doesn’t have glucose in it but CSF does. I used URS-10T from Health SNAP.  I’ve tested several times each of which have tested that there are traces levels of glucose. Not sure what to make out of that test result.

Hopefully I can get the CD this week and get in to see my doc.

P.S.  The VA did the CT with and without contrast so I did have to get a blood work up. Nobody mentioned any problems with the white count (reflecting a possible infection) but it was the VA?.?.

[tarheelEH]

Hi Gunns,
All the best to you! Since doctor didn't fine any pulse movement of tympanic membrane (from heart beating pace)-Indicating leak into Eustachian tube;  and radiologist preliminary didn't find any enhancement lesion in the brain so you may not have  CSF leak at all !  Perhaps you have sinus issue instead, this's sort of good news too;) I heard that CSF drops will show a halo ring after dried if you collect it onto tissue. I tried this myself but I couldn't tell the difference myself. But on my pre-op appointment Dr. Friedman did want me bended over and he checked on the drop from floor and re-confirm it is CSF leak. Well he has super magic eyes!  I hope your WBC is within the range, sometimes the number elevated a little but it could due to test margin that you don't need to worry about.  And that as long as your creatinine level is good , the iodine or barium based agent they injected into you shouldn't cause any issue to kidney function..
Perhaps this time you would want to bring sample drops (keep freeze or refrigerated ) to your doctor when you visit him.  Good luck !!

[gunns]

Thanks tarheelEH
I’m keeping my fingers crossed!  I think the halo test is for blood drops from your nose that are suspected to have CSF in them. The blood stays in the center and the CSF pushes to the outside forming a “Halo”.

Still working on getting the CD of the CT scan. Hope to see the doc soon. Just getting tired of the nose drip.

[gunns]

Delivered the radiologist report an CD of the CT scan to the doctors office. He called later the same day (Apr 4) and left a message that it wasn’t a CSF leak but didn’t confirm what it was or how to follow up on it. His advice was wipe my nose.

I am relieved that it’s not a CSF leak but what the heck is causing it and how do we get it to stop. It’s a real nuisance.