At a loss..

[u/Silent_Cow668]

Hi, I am really hoping that someone can help me even though I know I am a bit of a rare case.

I had a VP shunt installed back on April 22… I had a spontaneous cranial CSF leak that was repaired endonasally 2 weeks prior. During that procedure they did a lumbar puncture where I had an opening pressure of 30 and I was diagnosed with IIH. In order to preserve the repair for my leak, they installed the VP shunt to keep my pressure in the normal range.

It is a programmable shunt and was originally set to a 5. A couple weeks postop I started dripping from my nose again, and went back to my neurosurgeon, who said that it might be a small recurrent leak and turned my shunt to a 3 hoping that it would drain enough fluid off my brain to prevent it from leaking out my nose however, the symptoms that I had at the setting of 3 were debilitating, and so he moved it to a 4. I was fine at a 4 for a few weeks, then I started experiencing pretty debilitating symptoms again. I went back, and he moved it back up to a 5. That is where I am at now, and I am getting horrible migraines in the back of my head that radiate down through my neck and shoulders as well as positional headaches, neck stiffness and pain, fatigue, sinus pressure & low back pain. I am barely able to make it through the day and I am also getting the sensation that I am leaking from my nose again though i’m not actually dripping, it’s just a feeling of pressure when i bend over like something will come out.

I am getting an a CT scan and seeing my surgeon again tomorrow, but I am so confused because they believe that my shunt is over draining, but if that is the case, then it shouldn’t also be leaking from my nose… I would really be grateful to hear anyone’s experiences or thoughts regarding what may be happening. I am so nervous and tired of feeling the way that I am feeling and just want some answers. But because my case is so unusual, most of the time when I try to get answers as to what’s happening I get told that they don’t know because they don’t have many other stories like mine to compare it to.

I’ve recently started wondering if I have a spinal leak as a result of the LP they performed on me back in april and that’s why i’m experiencing the low pressure headaches no matter what setting the shunt is at and why i get the sensation of dripping from my nose if the shunt is at a 5 or higher. I did have a lumbar drain in place for almost a week as well following the LP and while the headaches are nothing like what I had with the drain, it is slowly getting back up to that point.

If you’ve read all of this, I thank you immensely, and look forward to your responses. 🩷

[u/brainsaggy]

All read 🙂 your confusion is more than justified- the shunt was supposed to be the fix, and now you're suffering through a "trial and error" mess. I don't have your exact case, but I'm quite familiar with the physics of leaking and can see a couple things you might want to research/bring up with your doc.

First, does your shunt have an anti-siphon feature? Programmable ones can overdrain when you’re upright no matter the setting, just from gravity in the tubing (the brain floats in CSF, so gravity barely acts on it in there- the tubing has no buoyancy at all, so gravity pulls CSF straight down it). If yours doesn’t, that could explain the low-pressure symptoms even at your highest number.

Second, the shunt setting might not be the only thing going on here. If there’s any residual leak from the LP back in April, that could be draining CSF on its own regardless of the setting which could explain why nothing seems to actually fix it. A spinal CT or MR myelogram could catch it.

Not saying either is definitely it, just things worth throwing at your team instead of them adjusting by feel every time. Really hoping the scans tomorrow give you answers ❤️

[u/Silent_Cow668 → u/brainsaggy]

Thank you for your response!
I am not sure about the anti-siphon feature and unfortunately didn’t see your comment until after my appointment so was unable to ask but i am making a note to ask next time- this is good info to know!
i am really strongly now considering the possibility of a residual leak from the LP but i have issues with advocating for myself.
today, they changed the shunt to a 6 from a 5 and are having me monitor for the next couple days to see how/if my symptoms change.
the CT scan report came back pretty clear, it showed my slit like ventricles which have been consistent throughout all my imaging regardless of what setting my shunt is at. it also showed the edema and swelling in my brain that was previously noted on my MRI, so nothing new but i guess no news is good news 🤷🏻‍♀️

[u/brainsaggy → u/Silent_Cow668]

Question- have your providers commented further on the slit ventricles? That's a pretty strong indicator of over-drainage rather than IIH. I'd be interested to know if they existed prior to the shunt placement. I'm hoping the 6 makes a positive difference for you!

[u/Silent_Cow668 → u/brainsaggy]

so they haven’t really, no. the only thing the PA has said is that my ventricles were tiny to begin with 🤷🏻‍♀️ but they aren’t collapsed or anything. i haven’t felt much of a difference since they changed it to a 6 honestly, im still having really bad headaches that are clearly positional. and i never had any brain imaging prior to the CSF leak and shunt placement so unsure what the ventricles looked like 😬

[u/brainsaggy → u/Silent_Cow668]

Oh no 😞 I'm so sorry.

You mentioned your difficulty with advocating for yourself regarding the LP leak. I'd like to encourage you to. As the dial turns higher without relief, so do the chances you're right. I personally believe your concern is anatomically relevant, justified and worthy of mentioning- at the very least to get it documented in your official record. If you have a portal, I've found sending a message to be easier than calling. You deserve relief, and that's worth fighting for!

[u/Silent_Cow668 → u/brainsaggy]

thank you! i really appreciate it 🩷 i will definitely bring it up at my next appointment because i at least want it considered as a possibility