Acoustic Neuroma: My Experiences

I never imagined I would post something like this publicly. I am posting this here about Acoustic Neuroma for three reasons:

  1. Awareness: Awareness about Acoustic Neuroma, as it’s a very rare (Fewer than 1 lakh cases per year in India) type of non-cancerous tumor on the main nerve leading from the inner ear to the brain. Kind of a brain tumor.
  2. Lend an ear to anyone suffering or who has suffered from Acoustic Neuroma (pre-op or post-op).
  3. Selfishness: Re-iterate acceptance for my “new normal.” Shake me off and get back to the routine.

I was diagnosed with Acoustic Neuroma or Acoustic Schwannoma in the first week of March 2022 after experiencing reduced sensation on the left side of the face, gradual hearing loss from the left ear, and balance issues while walking.
The tumor was a size of a small lemon that had started compressing the brain stem.

Surgical removal was the only line of treatment due to the tumor’s size. A 7-hour surgery was done on Mar 17, 2022, for the tumor’s removal. About 90-95% of the tumor was removed, and a small portion was kept to prevent damage to the facial nerve.
Developed Cerebrospinal Fluid (CSF) leak post-op and underwent another 3-hour surgery on Mar 22, 2022, for CSF leak repair.

There is negligible awareness about Acoustic Neuroma, and I had to do a lot of research to find more about the causes, treatment, recovery, recurrence, etc.

While I was all positive before and during the surgery, the recovery period has been mostly tough.
My balance and facial sensations are now back.
However, my “new normal” is Single Sided Deafness (SSD), Tinnitus, Left side facial paralysis affecting my speech & vision.
While the SSD and Tinnitus are permanent, left-side facial paralysis is gradually improving, and I hope the face returns to normal without requiring further surgical intervention.

I am now on wait and watch to evaluate the growth rate of the residual tumor with MRI scans every six (6) months.

I have been physically and mentally drained post-op. I am gradually coming back on my feet due to the efforts of the amazing support system I have; both family & friends and colleagues at work.

While I may be the “lucky” one to get this tumor, I am lucky to have such a solid support system.

I am happy to lend an ear and share my research, and experience with anyone wanting to know about Acoustic Neuroma.

Image Source: https://diseasesdic.com/

#Acceptance #AcousticNeuroma #AcousticSchwannoma #ANSurvivor #ANWarrior #Awareness #BrainTumor #Cause #Faith #Fate #Hope #Kind #LendAnEar #Life #Lucky #Support
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