Author Topic: 8 years since AN surgery  (Read 487 times)

JLR

  • Sr. Member
  • ****
  • Posts: 325
8 years since AN surgery
« on: November 01, 2024, 07:26:54 am »
Today, Nov 1, is 8 years since my AN surgery.  No hearing right side, eye very dry, finally can close, balance continues to be wobbly even after PT.  I had what I thought the best of the bests surgeons but chatting with other AN Patients they didn’t go thru what I did.  Spent a week in,hospital then a month in rehab and 2 weeks in a sub acute facility. I do have yearly brain MRIs to make sure all is ok and will continue to,do so.  I had my surgery NYC. Just needs to vent. Hello to all my friends on this site. Stay well. JLR

JLR

  • Sr. Member
  • ****
  • Posts: 325
Re: 8 years since AN surgery
« Reply #1 on: November 02, 2024, 08:22:55 pm »
Yes exactly!! My tumor initially got smaller with the Cyber knife. But after about six years, it started to grow, and it was just like yours on the facial nerve and on the brain stem which made it difficult to remove in its entirety so here are the complications on my right side same side as the acoustic neuroma I would not close eye for many years. My husband had to tape my eye at night in order for it to start to heal. it is later I can close it absolutely, but yes, it’s absolutely dry and I have to drop in absolutely every single day several times a day. I have facial pain all the time I’m used to it so it’s not so bad and my right side of my face has absolutely no wrinkles unlike my left side of my face which has wrinkles  to the surgeon six months after the surgery, he replied you’re not dead and I thought well that’s true. I’m not dead so I just move forward. But I wonder that I chosen a different surgeon. The outcome would’ve been better. I just don’t know. It was a gooda woulda shoulda. The problem always arises when the two too close to the brain stem. Sometimes the risk of having it removed is kind of better than winding up with a stroke or worse. I wish you good luck. Keep doing those MRIs to make sure that you’re OK and if you have surgery, make sure you got surgeon with a great track record. Stay well.

mwatto

  • Sr. Member
  • ****
  • Posts: 445
Re: 8 years since AN surgery
« Reply #2 on: November 03, 2024, 09:31:46 pm »
Its concerning to read your journey and I feel for you. I am at 6 years next Feb and had a similar size, location and three fractionated CK sessions. Although my trigeminal nerve looks fine per last MRI and the AN has shrunk by half I continue (less now) to get deep ear pain, eye pain that side and deep in head if I lie on that side. Next MRI will ask for focus on the facial nerve. I also have dry eye in that side .  I have read and saw on on video here that ANs can regrow as late as a decade after treatment. I work on inflammation as best I can to prevent this. I really hope there is a breakthrough with AN prevention soon or at least less invasive options. I am so glad you have recovered over time, how brave you have been.
« Last Edit: November 04, 2024, 03:19:47 am by mwatto »
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

DanFouratt

  • Full Member
  • ***
  • Posts: 131
Re: 8 years since AN surgery
« Reply #3 on: November 04, 2024, 09:23:45 am »
JLR, Sorry about your issues. I wish I had something to help.  I am 13 months post CK. In that time I have developed no new symptoms, I hope it continues.

Best of luck,

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

JLR

  • Sr. Member
  • ****
  • Posts: 325
Re: 8 years since AN surgery
« Reply #4 on: Today at 07:38:58 am »
I too continue to have Trigeminal issues. Although the surgeon at time of surgery managed to separate from tumor but I have facial issues everyday and on going numbness which will never get corrected.  I think I just waited to long to have surgery. The CK was great so I thought but the radiation made the tumor grow. like everyone on this site we continue to move forward.  Thank you all for caring.