My version and a CSF leak

[dredfern]

This is my acoustic neuroma surgery story beginning from the day before surgery. All the accounts on here helped me tremdously, as I like to be informed. I think how and when I was diagnosed is not so important.  I did have to wait 8 months for a surgery date though!  That's how goes here in NZ and that was not an easy time.

I arrived in hospital the day before my surgery as i was booked to have another MRI and CT prior. I was wheeled off to the theatre at 7.30am put under and told to expect to wake up with a weak face.

7 hours later I woke up, pain free, high as a kite with a surgeon testing my facial movements. They were 100%. Neither of us could believe it. Off to HDU you for the night where i was monitored vigilantly and very well cared for. I saw my partner here for a few hours and was very chatty but tired. No nausea, no vomiting and minimal pain.  There was a lot of dizziness which I would describe as being very drunk or when you spin around a lot as a kid and try to focus on one point on the wall.  My vision seemed blurry and difficult to focus. I was very thirsty but had as much water as I wanted and a lemonade ice block.

Prior to surgery I was most concerned about vomiting and a catheter.  These were both fine as I was beyond caring about the catheter and I had heaps of Ondansitron on board for the vomiting so never even felt nauseous really. My tongue on that side was strange, my ear on that side is numb and my eye is slightly dry but doesn't bother until the end of the day or in the wind.

Within 24hours I was back on the ward with catheter out and fending mostly for myself.  I left the morphine behind in HDU other than one tab at bed time for the nightshift. I could get to the toilet myself and managed one lap of the ward unaided.  These laps very quickly got longer and easier. I was still very dizzy though and taking it slow.

On day 4 I went home. A two hour car ride down windy hilly bumpy roads. This wasn't as bad as I thought it would be but it wasn't nice. I was glad to be home with my family despite the kids' noise.  Loud noises were horrible for a while but the other symptoms rapidly improved.

10days post-op I was driving short distances and reading and walking a short way. Everyday saw imporvement and I felt stronger each morning......UNTIL....BOOM, I leaned forward to play with my kids and water came running out of my nose.  A CSF leak was my third fear after catheter and vomiting and it just came true.  I was told that when I was at two weeks the risk was very low.  This was three and a half weeks post-op.  I panicked like you will never know.  I called my surgeon who suggested sitting tight for a few days to see if it calms down and closes up of its own accord.  That was 2 days ago now and it hasn't stopped. I'm terrified of having to go back for another surgery and put my kids and wife through that again. 

Since i sprung a leak my vision has become less stable again and my vertigo worse. I have mild headaches and severe anxiety.  It is so disappointing to be set back so far and nerve racking wondering if I will get worse or better.  I just want this whole ordeal to be over for me and my family and life to return to normal.

To people who are waiting for surgery I would say that my experience was so far, no where enar as bad as I had imagined but i know I am lucky and as yet I haven't had my CSF leak repaired. To those who are post-op, thanks for your information and sharing of details it really helped me prepare.

Dan

[dredfern]

Can anyone share any positive stories of CSF leaks sorting themselves out with conservative treatment ie,bed rest?  I was wondering how long it might take?  I have no headache but it is constant slow dripping. My surgeon suggests waiting but I'm getting anxious and worried about infection and having another surgery. It's been 4-5 days already. Thanks for any help, Dan.

[Greece Lover]

I did not have a CSF leak but I know one course of treatment is a lumbar drain, which reduces the pressure on the CSF and makes it easier to heal on its own. This would avoid a second surgery.
Best of luck.

[LakeErie]

My nasal CSF leak began the day after surgery and my surgeon said give it time. He said conservative measures, those other than repeat surgery, work over 80% of the time.
My nose leaked daily for over two weeks before slowing for a third week and eventually stopped altogether. If it had not stopped the surgeon would have lowered the fluid pressure with a lumbar puncture and if that failed to allow healing he would have tried a lumbar drain in hospital for a few days. My surgeon had done over 1000 CP Angle surgeries, both neuromas an meningiomas so he had seen just about everything.
I did contact a respiratory infection, bronchitis, in the hospital, which of course caused coughing that increases intracranial pressure and worsened the leak and may be the reason the leak I had to take longer to resolve than normal. But my surgeon was willing to give a long time to resolving on its own. Good luck

[dredfern]

That's comforting to hear. Thanks for sharing that. I'm only on day 5 now. Maybe mine will stop soon. I was having such a great recovery until this.  Did your surgeon make you just stay in bed or were you allowed up to walk etc? Thanks Dan

[LakeErie]

no bed confinement, but rest as in no real activity. Post surgery issues didn't allow me much activity anyway. I used a recliner most of the day. I first noticed less and less drainage on the pillow case each morning when the leak started to slow.
My understanding, for what it is worth, is that nasal leaks can taper off slowly or they can suddenly stop
Delayed complications are more common than most people realize. Were you on a steroid taper following surgery? As the steroid dose drops cranial nerves can then inflame and / or swell from surgical trauma - cranial nerves are encased in the skull for a reason, they are not to be messed with. So people may experience complications days or even weeks after the surgery. And then, there is a term used: survivor's euphoria which simply means we are so happy the surgery is over we initially feel better than we should.
I read a neurosurgeon's memoir titled You Are Never The Same Once the Air Hits Your Brain. Recovery is a long process for some us, but we make it to one degree or another. Again, good luck