2 Diff ?'s - CSF Leak Post-Op & Flying

[Mama R]

I read a couple comments on here that indicated one could have a CSF leak way past surgery. One was 5 years after choking & nose blowing (possibly inconclusive) and another 2 months after surgery. I guess I just assumed that once one was past surgery for a few weeks this was unlikely. Insight anyone?

Also, I travel via airplane quite a bit and had asked my doctor if it would be okay to fly in July. My surgery was Mar 21st. He said yes but by flying sooner would be pushing it. Just wondered if anyone has flown soon after surgery?How soon and if any complications occured? My first fllight will be just under 5 hours and I would hate to deal with a headache that long, not to mention something more serious.

Becky
(AKA Ohio Also)

[HeadCase2]

Becky,
  I've flown many times, starting about 3 months after AN surgery, with no problems. 
Regards,
 Rob

[oHIo]

Becky,
I believe some of the House Ear patients fly home within a few weeks of their surgery.  I was told I could fly a few weeks afterward, but that was before I had my two CSF leaks.  I'm still avoiding blowing my nose and sneezing only with my mouth open, as instructed.  (I'm sure this creates as interesting a mental picture as it is in real life.  Don't stand any closer than 100 yards if I look like I am about to sneeze  )

I am six weeks post op today, and you will be tomorrow.  I did ask if I was out of the woods for a CSF leak at this point, and was told most likely, but the neurosurgeon nurse practitioner did say some people have a "late" leak.  With all of my complications, I was afraid to ask.

By the way, nice hat.  You look groovy.  I don't think I would leave mine on long enough for anyone to make it fancy.  You could start a business on the side for AN patients wishing to look trendy as they recover. 

[leapyrtwins]

Becky -

My docs recommended not flying for 4 weeks post op.  I had surgery 5/31/07 and was on a plane from Chicago to Denver the first week of August.  I made a return flight about ten days later.  I had no problems during or after either plane ride.  I know people who travel to House fly much sooner, but I don't know what problems they've experienced - if any.

I never had a CSF leak, but from what I understand, although it is possible to have one way past your surgery date, the odds are fairly small.  I'm not a doctor, but I'd imagine you're out of the woods at this point.

oHIo -

I totally forgot about the sneezing with your mouth open part of post op recovery until I read your post.  I also loved not being able to blow my nose.  Ah, memories LOL

Jan   

[lori67]

Becky -

I was told that after Translab, the risk of a CSF leak was a "lifetime risk".  My doctor said it could happen at any time after surgery - even years later as the risk doesn't seem to decrease after a certain amount of time.  My doctor also does not seem to be as panicky about such a leak as some doctors sound.  He actually told me that if it happens, not to go the the ER, but to call him first because if you go into the ER with CSF coming out of your nose, they will immediately be rushing you in to the OR to shave your head and attempt to make it stop, when he explained that while it is something that needs to be taken care of - it does not have to be taken care of THAT urgently.  The leak is actually like a built in safety feature - if the pressure inside your head gets to be too high, your nose acts like a pop-off valve to drain some fluid to reduce the pressure.  Sorry to make your head sound like a lawn mower engine or something, but you know what I mean.  I'd have to say, with the way I've been sneezing from allergies this week, if I'm going to have a leak, it would be now!  I feel like I might sneeze my whole brain right out!   

As far as flying, I didn't fly until last month - 14 months post-op, but when I asked about it at my 3 month post-op check up, he said it would be fine.  When I did fly, I didn't have any problem at all - no headaches or anything.  The only issue I had was with the area around my BAHA abuttment swelling a little, which could have just been from the air pressure and altitude changes or something.

And oHIo - thanks for the warning!  I'll make sure to duck and cover if I hear you about to sneeze!! 

Lori

[leapyrtwins]

I was told that after Translab, the risk of a CSF leak was a "lifetime risk".  My doctor said it could happen at any time after surgery - even years later as the risk doesn't seem to decrease after a certain amount of time. 

Lori -

I am shocked by this 

Do you know if this applies to retrosigmoid surgery also - or just translab 

Jan

[Mark]

I'm with Jan in that I've never heard that a CSF leak was a possible risk over a number of years. Hopefully some of the surgery folks can chime in on what they were told. Obviously, A CSF leak is a by-product of damage caused during the surgery where the "seal" keeping the fluid in place is broken or ruptured. I would think that would show itself fairly quickly after the procedure, certainly within days or a few weeks. However, I guess it might be possible that an area that is weakened from the procedure may take a longer period before it "fails" and a leak occurs. It will be interesting to see what others have heard.

Mark

[leapyrtwins]

Okay, so now I'm wondering if CSF leaks are always a possibility for anyone who has had any type of brain surgery 

BTW, we really need an icon of a smiley face guy scratching his head!

Jan

[lori67]

Well, I don't know much about retrosigmoid, since that wasn't really an option for me, but from what I understand, and don't quote me here.. I'm not a doctor and I don't play one on tv... but....  once the "seal " (the dura), which is the covering of the brain that keeps all the fluid inside is cut, it will no longer be a closed system in there - I guess they can stitch it back together, but it doesn't actually re-seal itself so it's not water tight anymore.

If it does leak at the repair site, your body will respond by producing more CSF or increasing your intercranial pressure.  If the pressure gets to be too much, the "pop-off" valve would kick into action and would leak fluid to reduce the pressure.  It's your body's way of keeping things the way they should be.

Now, like I said - don't quote me on the technicalities here - but this is they way I understand it.    Who knows, maybe my doctor just isn't as good a tailor as others and doesn't sew very well!

Lori

[leapyrtwins]

Who knows, maybe my doctor just isn't as good a tailor as others and doesn't sew very well!

When I was in the holding area prior to my BAHA surgery, I told my doctor that my brother who is a taxidermist sews better than he does!  We both had a good laugh - but the nurse who was with us at the time looked like she couldn't believe I said that 

Actually my doc did a great job on my AN incision.  When I was looking at pictures of my BAHA site the other day, I noticed that you can barely see my AN scar 

Anyway, Lori, your explanation makes sense to me.  If I remember, next time I see my doc, I'll have to ask him his thoughts on this one.  Or maybe I'll ask some of the nurses at work - they might know.

It's kind of weird though to think that my dura might not be water-tight 

Jan

[cmp]

I know my experience is a little (ahem) dated, but after my AN surgery in 1988, I flew uneventfully back home (5 hour flight from Florida to Las Cruces, NM, where I was living at the time) 10 days after surgery. In fact, my neurosurgeon kept me in the hospital 10 days precisely because I would be flying a long distance post-surgically.

I never even thought about a CSF leak as a risk!

[lori67]

Jan, I was just happy my doctor turned out to be a pretty good hairdresser!     Couldn't really fault him for any sewing flaws, since I can't sew either.  Maybe a little embroidery would have been nice - my initials or something... 

I don't think the leak is a risk you need to lose sleep over.  I just think it's one of those things that could happen - but it's rare.  Just like AN's happen - but they're rare.  I guess just something to keep in the back of your mind so if it does happen, you're not completely caught off guard and know that it's something that needs to be fixed.

Lori

[leapyrtwins]

Gotcha, Lori.  I'm not losing any sleep over this issue - but somewhere in the back of my mind is the thought that if it rarely happens, I'll be that rare one.  Afterall, I did get the AN 

BTW the embroidery would be a nice touch.  Maybe we should start suggesting that to all the AN doctors out there.

My doc actually did a very decent job with cutting my hair - both for my AN and my BAHA surgery.  When I told him he hadn't done a half bad job, he said "that's why they call us surgeons and barbers" 

Jan

[4cm in Pacific Northwest]

I was still having CSF leak issues over 2 months post op…

I was on an airplane home from surgery 6 weeks post op…

They drugged me up on Diamox for the flight
http://en.wikipedia.org/wiki/Acetazolamide

(Nasty stuff that you should really take BEFORE bed as it knocks you out ...otherwise you feel like a pregnant mama with morning sickness if you take it in the morning)

When it comes time to stop taking the drug wean off slowly as an abrupt stop can have you swell up like a puffer fish (as did with me) to then have more leaks.

How long CSF leaks can happen after AN surgery? Gee that is a very good question? I too would like to hear the medical answer once you get it.

Many patients fly home within weeks after AN surgery… "drugged"

Daisy Head Mazy

[Mama R]

Thx all for your input. I certainly feel better about flying.

I do think I will further the discussion with my doc. I love to work in the yard, landscaping, and am chomping at the bit to get out there. I am afraid I will overdo it as I tend to get moving along on things and forget.

As for the embroidery job, mine looks like a question mark..Do all translabs or did I hit a winner?