CSF leak at skull hole - anyone ever have this?

[CarolAnn]

Hello,
I had the AN removed on 10/29/09.  I noticed the scar line swelling larger and larger after 2 weeks or so.  Started out just along the scar then  a week or so later 1/2" on each side of the scar then a week or 2 later it was 1" on each side.  Until now it is 2" on each side of the scar and puffed up full of spinal fluid - the size of a pear.
I am having surgery to repair the leak on 12/29/09.

When I was in the hospital for the surgery, I had thrown up and had spinal fluid leak like a faucet out of my nose, but luckily that sealed itself.

The doctor thinks that the titanium mesh stitches they put in on the meninges failed which caused the cement to fail.

Any one have this happen or know what I can expect?

Thank you!

Carol

[Amplified2000]

Hi Carol,

I don't have any advice for you because I have not experienced what you are going thru. I have however quite a bit of experience in post-surgical complications and I just wanted to say that I will be rooting for you and wishing you the best!

Keep your head up, there is always a light at the end of the tunnel

Kevin

[CarolAnn]

Kevin,  Thank you!  I am trying to keep a positive attitude and my fingers crossed! 
Carol

[Pooter]

I never had a full on leak (i.e. leaking through my nose, ear, mouth, etc..), however I did have a CSF build up around my scar like you described.  My doctor put me on diamox (a diuretic) in an attempt to bring the pressure down so that things could heal and seal up like they were supposed to.  Ironically, I had a slow growing allergic reaction to the diamox that landed me back into the hospital for 4 days a month after surgery.  Even more ironic is that after they took me off of the diamox (when I was in the hospital), my "bump" of CSF went away on it's own and I've been fine ever since.  I also wore an ace bandage wrap for several weeks (anyone else remember my homemade bonnet?)..

Can you talk to them about putting you on a diuretic or something to try and bring down the bump without surgery?  At least that's better than another surgery to at least try and see if it might work without surgery.

MsMaggie had the "bump" also and I think she was put on diamox too.  However, we had the same doctor, so I'm not surprised if we had the same "treatment" of it.

Just a thought..  

Regards,
Brian

[CarolAnn]

Hi there,
they tried a "Tap & Wrap".  Put a syringe in, drained it out, wrapped my head very tight and let it stay on for 48 hours, changed the wrap and it was 50% full again, and within 1 hour, completely full.

Then they tried diamox.  The diamox did act as a diuretic, but the fluid stayed full.
Sorry you had an allergic reaction to it! My hands started tingling and feeling numb, so did my feet!  What was your reaction to diamox?

The wrap was tried without the draining of it too.   The doctor said sometimes they heal themselves, but he took a CT scan and saw the titanium mesh was separated and he could track the flow of the fluid through the cement.

Glad you didn't need the surgery to repair!!

thank you for your help!

Carol

[Pooter]

Carol,

Oh well, worth a shot..  Sorry about the upcoming repair surgery..  I'm confident that all will be well in no time.

About the diamox..  As I said, it was slow growing..  So, at first I was just cold ALL the time (it could be 80+ in the house, and I was under a blanket shivering).  That went on for, I would guess, a week or so.  Then, I was cold and sorta achy.  I got progressively more and more achy to the point that I looked like an old man when walking.  Then, I was cold, achy and would get sudden, debilitating headaches and almost as suddenly they would stop.  About the time that I started running a fever for a few days (in addition to the cold, achyness and headaches), I knew something wasn't right, so I called my doctor and he set me up for a spinal tab.  The symptoms progressed over several weeks.  My initial surgery was 5/8 and it was July when I landed back in the hospital (actually watched some July 4th fireworks from my hospital bed out my window).  So, I guess it was about 2 months after surgery, not 1.  The infectous disease doctor in the hospital told me that they found white blood cells in my spinal tap, and the type of white blood cells they found usually indicate some sort of allergic reaction.  After having been off the diamox for a couple of days, we both deduced that it was some sort of allergic reaction to the diamox.  After 4 days, I was discharged and have not had any of those symptoms since.

I looked stylish in my homemade bonnet, though..  hehe  

I'm confident the leak will be repaired and you'll be able to get back onto the healing journey..

Regards,
Brian

[CarolAnn]

Hey Brian,

Thanks for the encouragement!  Always good to find someone who went through something and is standing on the other side to say, "Hey, keep going, it's okay on this side!"

I'm sure you looked stylish with your bonnet, I was calling mine a ninja band and thought it would certainly start a fashion trend!

:~)

Carol

[Pooter]

Carol,

Hey, keep going...it's okay on this side!  

Here's a "Before" and "After" picture that I posted a while back showing the progress to my facial weakness... But, in the "Before" side, I'm wearing my bonnet..  Ain't I stylish and a trendsetter?  Heh..



The span between "Before" and "After" if I remember right was about 6-7 months.

Seriously, after the leak thing is taken care of, healing in general will come faster.  I remember remarking to my wife after I got out of the pokey (hospital) the 2nd time, "OH!!  This is what recovering is supposed to be like!"  You'll be amazed..

Regards,
Brian

[CarolAnn]

I did not think to have anyone take a photo of me in the ace bandage!  I did have my daughter take one picture of my incision about 3 or days home - so, about 8 days after the surgery.
But nothing since. I should have someone take a picture of the pear on the back of my head!

Good to remember these things so you can mark how far you've come.

 

Carol

[msmaggie]

Yep, I had a CSF leak at the incision site, slightly bigger than a golf ball. I had a spinal tap done twice, and after the first one the reduction in pressure made the lump go away temporarily.  It never came back as big, but it went away completely after the second spinal tap-turned out I had meningitis. We kept a pressure bandage on it to keep swelling down, and I took Diamox until I broke out in hives.  And yes, the Diamox made my hands tingle!  After I recovered from the meningitis, which also reduced the spinal pressure, the leak healed itself before we had to consider more surgery.

The healing process is a bit bumpy sometimes, but with patience and good medical care, you will get there!  It is sometimes 2 steps forward and 1 back.   Good luck with your procedure!  I know you are ready to have this behind you.

Priscilla

[CarolAnn]

Hi Priscilla!   That darn Diamox!  I wonder if there is anyone with NO reactions?   

The leak was seaping out, and that stopped. But because it was seaping, the doctor put me on keflex - I'm on that for another 2 weeks, will have the surgery and 10 days after to still be on the antibiotic.

Yours being the size of a golf ball, it did not keep scalping you. Mine is scalping me.  it is 5" long and 4" wide and off of my head at least 1" tall.  If you can imagine that.  Not sure why anyone would want to imagine that.   

Very ready for this to be behind me. I drive for a living and to do that, I have to not have a headache and stop being dizzy. Hoping that hole getting sealed will help!

Thank you Priscilla!   

Carol

[Jim Scott]

Hello - and welcome CarolAnn ~

I'm sorry you have to deal with the dreaded post-op CSF leakage but I trust that your AN removal surgery went well and the tumor was vanquished.  Although I didn't experience a CSF leak post-op, I can sympathize with the hassle you're going through and the unpleasant prospect of more surgery, to fix a problem from the first surgery!  Yikes!  Acoustic neuromas - the 'gift' that keeps on 'giving' (problems).  However, as Brian and Priscilla have pointed out in their respective posts, it does get better.

I kind of regret that I never had any photos taken after my surgery but frankly, even though I was posting on these forums at the time, it just never occurred to me to do so.  Besides, I'm camera shy and probably would have refused if my wife (or anyone) had suggested they take a photo of me during the first few days of my 5-day, post-op hospitalization.  Oh, well. 

Here's hoping this issue can be resolved soon and you can begin your recovery leak-free.  Meanwhile, know that these forums are here to offer information, advice and most of all - support from other AN patients who understand what you're going through and can empathize with you and cheer your victories when they occur - and they will. 

Jim

[CarolAnn]

Thank you Jim! 

The doctors left 10% of the tumor in as it was right on my face nerve.  But they said they cut the blood supply to the tumor so it should not regrow. 
My facial paralysis is minimal.  My hearing is gone.... my tinnitus is loud....my balance is not right....my ear feels full and numb inside.  My eyes are still blurry.  All manageable.  The spinal fluid headache, not so much.
If they can fix that by fixing the leak, yippee! 

Glad to have somewhere to turn for support!

Carol

[Cheryl R]

I had no reaction to taking the Diamox.    It was given as part of the routine post op protocol back when I had my first surgery in 2001.           I think while just in the hospital though.    Not given by time of the 2006 surgery.            While working as a nurse,not with neuro patients,I only saw it given a few times.     Lasix is the diuretic of choice unless need a real stronger one. 
                                                Cheryl R

[CarolAnn]

Hi Cheryl,   
My niece has NF, born with it.  She is now 19.  Tumors everywhere.

 When they found this tumor, I wondered if it would be NF2 for me and that would mean my niece had it handed to her by heredity. 
My brother is not sure.  Maybe I should have a genetic test.  The doctor said it is 50 / 50 chance of hereditary or mutation.

You have been through the mill!    Were you ever able to return to work?
With my job, I'm afraid I may have trouble.  I drive 200-400 miles a week and have to look at numbers all day. 

I guess time will tell!