Monday, June 11, 2012

pseudo tumor cerebri

On Wednesday I will be going back to the neurosurgeon. At that time, we will discuss whether a pseudo tumor cerebri is causing my post-op problems. 

The pseudo tumor cerebri is common post-op when it comes to a Chiari decompression, although people can develop it beforehand, too. It's not limited to Chiari patients. So what is it?

Much like the name implies, a pseudo tumor cerebri is a mass that acts like a tumor but isn't one. It happens when the pressure inside of your head builds up. This can be caused by many factors, but post-op can be due to a CSF leak. The symptoms that are present are similar to those that you would find with a brain tumor. 

According to the Mayo Clinic's website, symptoms include:

  • Moderate to severe headaches that may originate behind your eyes, wake you from sleep and worsen with eye movement
  • Ringing in the ears that pulses in time with your heartbeat
  • Nausea, vomiting or dizziness
  • Blurred or dimmed vision
  • Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes (visual obscurations)
  • Difficulty seeing to the side
  • Double vision (diplopia)
  • Seeing light flashes (photopsia)
  • Neck, shoulder or back pain
On the Chiari and Synringomleia site, they talk about PTC.

For treatment, it states that " In one retrospective review, it is claimed that up to 41.6% of failed Chiari patients may be diagnosed with pseudotumor cerebri syndrome.4 If there is adequate decompression as noted on MRI, then a lumbar puncture may be used to measure opening pressures, and also to perform diagnostic and therapeutic CSF drainage to determine whether drainage improves symptoms. Both ventriculoperitoneal and lumboperitoneal shunts are options in patients who show symptomatic relief from the diagnostic lumbar puncture and CSF drainage in this setting."

This is a possibility for me since in the past two days I have now picked up neck and shoulder pain that is getting increasingly worse. It is possible to have both a PTC as well as a CSF leak so both of these need to be ruled out on Wednesday. 

Medications can be used to help lessen the symptoms, but in most cases another surgery must be performed to get any relief. Normally, a shunt would be placed in order to help drain the fluid that is causing the build-up and the pressure. If there is a CSF leak, then a blood patch can be applied to stop the leak. If the dura patch is being rejected, then a new surgery might be performed altogether with a new kind of patch. 

A PTC might not be seen on a MRI unless it is very large. Instead, a lumbar puncture (LP) might need to be used. These can be dangerous for Chiari patients so don't go running off to your ER if you have pressure. It's important to talk to your NS first who can help you determine if there is any danger to having the LP. 

So really, we don't know where I am at as of yet. I am probably going to need an additional surgery but hopefully it will be a small outpatient one that just requires a simple blood patch to stop the leak. Of course, with the EDS it's a possibility that the dura is not working the way it should, either, and that is an entirely new problem altogether and would require the decompression to be repeated. 

Links to info about PTC:

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