Pseudotumor diagnosis after CM decompression

[Krystinamarie]

Hello,
I’m hoping to see if anyone here can give me some advice/share their experiences on a pseudotumor diagnosis. Specifically after a decompression surgery for CM1?
What course of treatment, if any, worked for you? I’ll include my history below. Thanks in advance!

I was diagnosed with chiari malformation in 2013 then had decompression surgery -c1 laminectomy, tonsil resection, no shunt-
in 2014 (no tests other than MRI and going over symptoms) I was so desperate to get relief from the chronic migraines, nausea, pressure etc I was ready to try anything at that point.
Extremely difficult recovery: poor healing, chronic meningitis, worsened symptoms, new symptoms (bad memory/concentration, confusion, excessive fatigue, balance, vision issues, ringing in ears) and developed Hashimotos and what they suspect is Lupus.
For the last year or so I’ve been feeling worse, almost like having the flu. Really run down, always tired, simple tasks wear me out, just a general feeling of not feeling good but not being able to pinpoint it specifically? Lol maybe someone can relate. No depression or anxiety just that odd feeling.

I’ve since been tossed around between doctors who either 1. Think I’m crazy 2. Don’t want to be liable or 3. Focus on medications to treat individual symptoms.

I got in contact with Johns Hopkins and my records were reviewed. After going through my records they called to let me know they think my issues could be caused by Pseudotumor Cerebri and requested I fill out more paperwork for them.

Just hoping to get a better understanding of the condition so I can be as prepared as possible going into an actual appointment.

Thanks again!

[selmaS]

Hi....well were you tested for EDS ?
PTC or IIH as it is more commonly referred to now....is a common issue post op form decompression surgery.
Have you been told you have excess CSF...if so, this can happen with the dura patch if you have EDS and have a patch made of some material that is not your own tissue.Some have this condition or are DX'd with it prior to a Chiari DX while others see it more clearly post op....not sure what the issues are for you.....