Announcement

Collapse
No announcement yet.

Looking for an old member...1Lily

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Looking for an old member...1Lily

    Came across an archived post from 1Lily from 2011. I too have the same issue she described & am seeking information before my next appointmemt with my surgeon.

    I was diagnosed with Trigeminal Neuralgia in 2012. I had an MVD in March 2015. 2 weeks post op I had a CSF leak through my nose. My surgeon reopened my incision & did a repair. Everything seemed okay & I seemed to be healing, but then in September 2015 my TN symptoms started to return. About the same time, I started to notice a bulge of what I assumed was fluid behind my ear, over & around my surgical site. I was hearing a dripping sound & had a swimmy feeling when I pulled a top over my head. At first my surgeon just wrote it off as a small leak that wasn't important. But the bulge got bigger & I pressed for something to be done. So he went in again in January...without doing an MRI or CT first. He told me that it was a pinhole sized, slow leak & that it was rewaxed & should be fine. All looked good for about 3 weeks, but then it came back. I had a follow-up with him in Feb & again he brushed it off, but said maybe we will do a lumbar drain. I I see him for another follow-up at the end of the month. My TN has returned & he's deemed the original surgery a failure so it seems I will see him fairly regularly.

    I guess my questions are: does anybody have the bubble? Or has anyone heard about this happening? Particularly so long after...I was in for the latest repair 10 months post op.

    I don't have a headache...well, maybe. I have been dizzy, but it could be the meds I'm on (Tegretol & Baclofen). I've been nauseous off & on for weeks. My head feels like it's being pushed underwater...very pressurey...but that could be meds too. I think my hearing is OK, but my ears, both sides, feel like they keep popping. My vision is fine. The bubble gets bigger & smaller throughout the day & I can push it (the fluid) in...it's centered over my surgical site, over the bone plug. It is starting to get sore, especially in the morning.

    Please help. I'm at a loss. If anyone has any ideas, I would really appreciate hearing them. 1Lily described almost exactly the same thing & it's why I am seeking her out. thank you!
Working...
X