Hi Emi,

I have not had surgery so I do not have the same experience you have had.  However, sometimes people feel like a tumor is growing back when it really is not.  So, I don't want you to be anxious and worried about something that may not be the case.

Will you have another MRI soon?  The MRI can show if there is any change since your 4-month post-op MRI.

Best wishes on your continued recovery!
Don

10 years ago, I started my AN journey,  it's been a long road of discovery, frustration, and acceptance.  I've changed significantly in both personal and physical ways.  Even though I never planned to retire, I recently sold the company I started 30 years ago to concentrate on my health.  I've back to running every day which brings me a bit of release.  I do it to run "the crazies out of my head".... Running everyday makes me feel whole again.  While running, I often feel everything is normal again, my balance is great, my worries are few and far between.  It's when i'm done that i'm reminded that I have little to no balance, have 90% hearing loss on my AN side and my cooldown walks imitate a drunk trying to pass a sobriety test. 

2 things I know for sure,  MRI machines were designed by people that specialize in torture and life is like a bank account, you make deposits when it's good and withdrawals when not so good.

I've been through dozens of MRI's, multiple radiation treatments and the untold short and long term unwanted after effects, years of steroids, rituximab infusions, surgery, headaches, loss of hearing, vertigo and balance issues and a 10 year history of limited to no answers from an array of doctors, specialists and physical therapists.

Once again, I would like to express my gratitude to everyone here for your shared experiences and your kindness!  Without this resource, my journey would have certainly been much less tolerable. 

Please take the time to contact me if you're newly diagnosed or facing a difficult decision or just frightened by the overwhelming decisions that need to be made, I’ve been there.  Maybe something I've been through will offer you a bit of comfort. 

Hi guys, 

I had my tumor removed 8 months ago by Dr. Schwartz and Dr. Friedman. It was 3.0 cm x 3.1 cm so they did a translabyrinthine approach which resulted in complete hearing loss. It was considered a subtotal resection, but just barely since they got almost all of it. They said my MRI 4 months post-op looked good and didn't seem worried. Since the surgery though, I have felt increases of pressure where the tumor was on the right side and I feel overly paranoid that it is growing back. Do you think that is just a side effect of the hearing loss or is it not normal to feel more pressure changes. Looking to hear if anyone has experienced anything similar/ if it indicated regrowth or not.

Best,
Emi

I would also be curious if anyone has had any experience with Lenire?

Hi Jennifer1969,

What did you find out from your MRI?  And what is the latest with your tinnitus?