Author Topic: Regrowth: Who Has Had Two Surgeries?  (Read 1141 times)

frenchgirl

  • New Member
  • *
  • Posts: 10
Regrowth: Who Has Had Two Surgeries?
« on: October 07, 2022, 02:17:40 am »
Hello, sorry for my english, i am french !
My neuroma is getting bigger again, after translab and gammaknife. I have different opinions from doctors: new surgery or second time gammaknife,
I am looking for testimonials from people who have had two surgeries. How long after the first one ? Did you have also gammaknife ? Was it a problem? Did you have the same access the second time (translab/retrosigmoid) ? What about the surgery sequelae ?
I'm not 40 yet, I don't know what to do ! And I'm scared !
Thank you so much for your help
melanie
3 X 3.5 X 2. 7 AN diagnosed 12/2017
03/2018 translab surgery ; facial nerve preserved ; hearing loss
02/2020 Gammaknife ; 0.499 cm3
11/2021 regrowth 1.032 cm3
09/2022 regrowth 1.579cm3  (1.2 X 1.7 X 1.7)
New surgery or new gammaknife ?

bri-82

  • New Member
  • *
  • Posts: 30
  • You gotta be kidding ...
Re: Regrowth: Who Has Had Two Surgeries?
« Reply #1 on: December 26, 2022, 01:22:35 pm »
I had sub-occipital surgery in 2011 followed by GM in 2012 which failed after 3-4 years. The problem in my case is a cystic component which for some reason continues to regrow medially next to the brain stem and push on the cerebellum causing symptoms. In 2017 I had a translab procedure to "remove" the cystic component which also failed after 3-4 years. The cystic component has started to grow again. The remaining solid nodule has not changed much over time. In the beginning of 2022 I had CK. The thought by the doctors is that for some reason the GM did not kill all the cells causing the cystic component--hence the CK in 2022. From the timeline it seems that every five years or so I've required some type of intervention due to symptoms. Your doctor(s) should be able to come to a consensus with respect to your specific case given the outcome(s) that they think will be most successful for your longterm health (including mental health). If they cannot then it's probably time for a neurosurgeon and a radiation oncologist that BOTH treat the condition on a regular basis and have been for many years.

I just turned 40. You will be fine. Life will always throw you curve balls. Some are just luckier than others and its only for the time-being. Feel free to reach out if you have more specific questions.

~BM

« Last Edit: December 26, 2022, 01:36:58 pm by bri-82 »
4.5 cm Right AN.
Sub-occip. Surgery 2011 @ Wash. Hosp. Center
Gamma Knife 2012 @ Wash. Hosp. Center
Translabrythine Surgery 2017 @ Johns Hopkins
Cyber Knife 2022 @ Johns Hopkins
Sub-occip. Surgery 2023 @ Johns Hopkins