Kenneth,
I am so sorry you have to go through this! What is unusual is that this CSF leak happens so late after surgery. This is really strange and scary for all of us! It is not great that the only 2 available neurosurgeons in Denmark are going away but unfortunately, this situation can happen in the US as well. Many of us travel for surgery for one reason or another across the US , and, if we start leaking at home and have to come back to the original neurosurgeon by plane for additional treatment, it is by no means fast and easy. There are many neurosurgeons in the US but most are very territorial and will not see you after surgery. It's nerve-wracking, expensive and inconvenient, so I completely empathize!
You have been given excellent advice so far. I would like to add that if you get a giant headache, call 9-11 anyway even if there is no fever because the fever will be there soon enough. Once in the hospital, demand broad spectrum antibiotics because the danger of any CSF leak is meningitis which can have worse consequences that the surgery itself.
The way the leak is manged in the US if the patient is far away from the original neurosurgeon is to try DIamox first. Then, if it does not work completely, at least it reduces the leak and the patient can travel by plane for additional treatment much safer (imagine how many interesting infections one can pick up on the airplane). Diamox is a sulfa drug which some people are allergic to, myself incluided. So, this medication was not an option for me. If I leaked, I would have to travel back- not an attractive option.
A step above in terms of invasiveness is a lumbar drain. The patient is put in the hospital anywhere from 1-9 days, lumbar drain is inserted and CSF liquid is collected into a closed system, not exposed to air. Everybody does it a little bit differently, so there is no sense of talking about the details. It is a chance of infection but not as much as the brain surgery and they do cover you with antibiotics. I had one for 9 days after my first surgery in 1988 and it was actually the worst experience I remember mainly because I had to lie in bed pefectly still and every attempt to get up or even lift my head from the pillow resulted in a gigantic low pressure headache when too much too fast CSF is drained away. Let's hope the system your doctors will use will be more forgiving to rapid changes in your position. My CSF actually did not leak but collected around the incison area which kept increasing in size giving me a high pressure headache - the mother of all headaches. The fact that your CSF leak, prevents you from having it because it prevents CSF from building up.
The next step is a shunt. Some neurosurgeons will even skip the lumbar drain and go straight to shunting. There are two general classes of shunts - lumbar peritoneal and ventricular peritoneal. The first one drains CSF from your spine to to the stomach and the second one goes from your head to your stomach. The first one is considered simpler and easier in all respects but not all patients are candidates. I got an LP shunt in 1988 after my lumbar drain failed and it allowed me to finally start healing. If my memory serves me right, I would not have gotten it if I had your type of CSF leak (it would have been a VP shunt) but I would not be surprised if that would be different from doctor to doctor.
The final step is surgery - to repair the source of a leak. It is different for everybody because the source can be different. Some people have a problem with the Eustachean tube, others have their incision cleaned and redone. I can't even begin to guess what your problem is.
If you are not allergic to sulfa drugs, try to find out if Diamox is available in Denmark and try to have somebody prescribe it. Meanwhile, your goal is to avoid the infection, so try to keep everything clean (especially your hands), avoid crowds as well as bending and lifting anything other than the telephone.
Please, keep us posted as to how you and your family are doing. Best of luck and, even though it is a scary time, try to breath! Chances are overwhelming that everything will be fine at the end.
Eve
PS According to the latest thinking, the danger of meningitis in the absence of CSF build-up, headache and fever is small, that is why you have not received antibiotics so far. Your doctors are not being negligent.
