I want to offer a bit of a content warning to this blog post. My experience with a CSF leak was probably the more grueling part of my entire acoustic neuroma journey. I know that not everyone wants to know the depth of challenges that can occur with a diagnosis. Some people prefer to know less in order to limit anxious thoughts. Others find research and error bounding comforting. Just choose what is right for you, and know that this won’t be the most upbeat of tales. Also, a CSF leak is not a common side effect and it seems to be getting less common. It is not a certain outcome of acoustic neuroma surgery.

In case you have no clue what CSF is or why a leak matters, I will take a moment to summarize. Everyone has a special fluid call cerebrospinal fluid that bathes their brain and spinal cord. You need a very specific amount and pressure for your brain and spinal cord to be happy and healthy. If the pressure drops you can have very severe pain. Besides pain and other unpleasant symptoms like nausea, dizziness, and foggy headedness; a CSF leak is important because it essentially leaves a pathway open for infection. If you have a leak that means the area around your brain or spinal column isn’t sealed and it can lead to life threatening illness like meningitis. If you have any signs of a CSF leak contact your doctor right away.

A CSF leak is a risk after acoustic neuroma surgery because the surgeon has created a hole to remove the brain tumor. After the surgery the surgeon seals up the hole but you essentially have a weak spot in the dam. Also, if the pressure isn’t quite perfect for the fluid volume it can create a leak through other avenues like the nose or ear. Things like coughing, straining, vomiting, can all increase pressure. You can probably remember a time you strained and felt pressure in your head- that is a legitimate experience of CSF pressure. If you haven’t had a recent surgery it probably won’t matter if there is an increase in pressure, but if you have a weakness after surgery that extra pressure can be enough to cause a leak.

CSF leaks are most likely to occur within a few days of surgery, but they can also occur weeks and even months later. Typically a leak from acoustic neuroma surgery has clear liquid dripping from your nose or from your incision. The dripping from your nose will be from one nostril and regular like a faucet drip, you can lean over and see it drip in a steady rhythm. Treatment for a CSF leak is typically either a lumbar drain or surgery.

I suspect my CSF leak happened because I couldn’t stop vomiting the first night after my acoustic neuroma surgery. I was so motion sick from losing my balance nerve. All that straining could not have helped the situation, at the least. I had my leak in the days after the surgery while I was still in the hospital. My recovery had been going quite well and they were discussing releasing me from the hospital the next day when I noticed my nose was dripping. I told my neurosurgeon right away. He had me hold special paper under my nose and lean forward. The paper soon caught several drops and looking at it the surgeon knew it was a CSF leak. He treated it like an emergency and immediately got a lumbar drain started.

I hope you never have to experience a lumbar drain, but essentially this is a needle inserted in the spine to attach a hose to drain CSF into a bag. This is done to lessen the CSF volume and the corresponding pressure so that the structures can heal and seal where the leak is located.

I have had two natural childbirths and appendicitis and I have never had pain like that lumbar drain. When it was first installed a lot of CSF immediately drained into the tube and bag because of gravity- I was sitting upright. The doctor actually pushed me flat when I cried out in pain in order to lessen the pull of gravity and the amount of fluid draining. The brain does not like having less CSF suddenly and it is an intense pain. I felt as if my head was going to explode. I was not given any extra pain medication before the procedure as it was treated as an emergency. I would really recommend requesting pain medication if you ever are in that situation- especially something that helps with disassociation.

Once the drain was installed the medical staff proceeded to open the hatch and drain more fluid briefly every hour throughout the day and night. While each draining session hurt, it thankfully was not the super intense pain of the initial drain set up. I essentially lived with head pain for the entire time of the drain treatment. They drained round the clock for five days and then had me stay in the hospital another day to see if the leak restarted once the draining stopped. I was very fortunate in that my leak did heal from the drain and I did not need surgery or any further treatment.

During the drain process, I did have the drain detach and had to get another drain inserted. Also, after finishing the draining they gave me stitches on my spine. When I got the stitches removed I again leaked at the drain site. I went back and got dissolving stitches the second time, and did not have any further issues.

After doing through this leak and drain process, I was very headache prone for some time. Obviously, some headaches are very normal after a brain surgery. However, I have spoken to people who felt their head pain wasn’t that bad or that they never needed opioid pain medication after acoustic neuroma surgery. I was not that fortunate. I had significant head pain for some time. It did gradually improve over time. It was headaches all the time, then a headache at some point each day, then headache most days, and less and less. It took about eighteen months to fully resolve I feel. These days I just feel that if I am under the weather in any way (sick, over tired, overstimulated, etc.) I will have a headache with it. I don’t have super common or terrible headaches anymore.

While the pain and extended hospital stay were not fun, I was very grateful for the prompt and quality care I received. I never had another issue with my CSF after the drain process. I had no infections. These days I live a full and active life with this anecdote in my history. I did struggle with runny noses bringing up feelings of trauma for a bit after this experience, but the high frequency of experiencing a dripping nose helped me move past it. However, I did choose to pass on an epidural when offered one for my second childbirth, because if I never have another needle in my spine- that would be just dandy.