Hi Ulrike,

Not too sure about this, but I remember someone saying that they had a salty liquid running down the nose and throat, also some people get pain I think when laying down, or is it better laying down, im sure someone will come on and explain it better, dont worry too much,Good luck.

Hi,
The possibility of CSF leak is less than 1%.
I'm actually the "lucky" (?) one who got CSF leak after the surgery.

Once this happens, you're not supposed to lift heavy things until the torn dura get completely healed. I needed to stay in ICU for 5 days until the dura was healed on its own. While I was there, I was hooked into lumber drain tube (the procedure is very painful), and I was laying flat most of the time.

You know when CSF is leaking by salty water coming out of your nose. Also, you'd taste something salty at the back of the throat.

When CSF leak occurs while you're sleeping, you need to sit upright until it stops, or go to the ER if it doesn't stop on its own (or call your doctor).

CSF leak is a really bad complication, and I hope you don't have to go through what I had.

There is a terrible taste that you will notice. I was given a lumbar puncture to help prevent a CSF leak by draining CSF for a few days. Then I did have an issue with low CSF so I know what the headache pain is with it. You need to stay as flat as possible as much as possible. If I was upright more than 15 minutes I was in agony. This makes sense when you realize that there was not enough CSF to protect my brain. I can very very adamantly recommend that you NOT fly during that time if at all possible.

Someone else may have a more clear memory, especially, Erin, but I believe there is something the doctors can do with a black light to verify that drainage is CSF.

Some of the things you are told to watch for are large gushes of drainage from the nasal passages. The bitter taste we've already mentioned.

You are strongly cautioned not to stain in any way. You will not be allowed to bend, to lift, to strain to go to the bathroom, to use a straw, to sniff, to sneeze or to blow your nose. If you use a CPAP or a biPap machine now, you will be given a break from it for a while.

I hope you are able to do as some other people I have heard of who took a few weeks off just before their surgery. In retrospect, I wish I had done that, too, especially because I felt increasingly worse with the acromegaly and the misery was becoming unbearable. I hope you have a dramatic improvement and a speedy and uncomplicated recovery.

If it happens while you sleep will you wake up? I am such a sound sleeper, what happens if you don't wake up?

I want to clarify one thing...

If you get the CSF leak and eventually hooked into lumber puncture (drain), you need to lay flat most of the time. However, if it occurs while you're not hooked into the lumber puncture, then you need to sit upright until it stops, (or if it doesn't, your doc will do the lumber puncture).

When CSF leak starts while you are sleeping, I think you'd notice when the leak is really bad. I was a sound sleeper, but when my leak re-occurred, I woke up. I called my surgeon's assistant, and I was instructed to sit upright (it was after the lumber puncture was removed). It stopped in 40 min, but I couldn't go back to sleep because I was really worried, so I sat upright entire night.

I think the other posters have pretty much summed everything up, but I just wanted to add that you will most likely wake up if you experience a CSF leak. It had a very salty, bitter taste that was hard to sleep through! :)

Also, I know it really helped me to sleep on one of those bed triangle pillow things right after the surgery, so if you use one of those then you'll already be partially upright anyways. Good luck and I hope your surgery goes well!

You've been given lots of good avice here. I'll just stress that post-surgery, get lots of rest, don't lift or strain and refrain from coughing and sneezing. There's healing that must take place. It does help to sleep with your head elevated. Best wishes to you.

Thank you everybody! I am so glad I found this group!
Ulrike

I had a CSF leak, too. It started a couple of days after surgery, and was a clear liquid that dripped from my nose if I leaned over. It had been doing it for several hours before I gave in and told the nurse about it. I later found out that was NOT smart, as it increased the time it was open to infection. They checked it by having me lean over a white paper towel and let it drip. It leaves a pinkish ring. Weird, huh? I had a lumbar drain for 5 days. Putting it in was NOT fun, but I managed fine after it was over. They made a big deal about lying very still while it drained(mine usually took about 15 min.) and 30 min. afterward. When I did that, I did not have the headaches. Other than those times (about every 4 hours) I was free to be up and pacing the halls, which I did A LOT. I just drug the drain bag around on an IV pole. I really felt better after walking around. It helped me breathe better and kept me from getting sore. I also had to keep the head of my bed at a 45 degree angle except during drains. I know everybody's situation is different, so just do as you're told and it should be fine.

Just to confuse the issue, you can also have a tiny CSF leak and it be nothing to worry about. They can heal of their own accord. For me I had "very minor" post-operative CSF leakage (it said on my discharge notes -- no one told me at the time). It was a slight drip along with the blood that healed before I left hospital.

I think you would know if it needed attention. Just to confuse you, all that messing around in my nose did something to the balance of mucus in there. It's not CSF, it's just plain old runny snot, and they won't let you blow your nose!

Some months after the op, I had an odd slight salty taste in my mouth which I wondered if it could be CSF. I asked my GP who told me "if you had a CSF leak now, you would have had one awful headache". He attributed the saltiness to the BP meds I was on ("taste perversion" is in the list of side effects).

Yes, don't lean over immediately after the op. I leant over to pick up a slipper and promptly dribbled blood all over it!

John