Author Topic: Regrowth  (Read 3422 times)

go4sherri

  • New Member
  • *
  • Posts: 6
Regrowth
« on: February 09, 2019, 07:05:17 pm »
Hi all, I had my surgery 6 years ago (almost exactly), it was translab approach and a small bit was left behind as it was too intertwined with the nerves. I have been going every second year or so for follow up MRI's and unfortunately I received a call yesterday that my little friend has grown. Needless to say, I'm pretty chocked up about it. I will be seeing my surgeon in a month as he is away, to talk details.
Has anyone here had experience with regrowth after translab surgery? I know everyone is different but I'm feeling really low right now.

Kathleen_Mc

  • Hero Member
  • *****
  • Posts: 776
Re: Regrowth
« Reply #1 on: February 12, 2019, 03:35:54 am »
Yes I had a regrowth, but I had been told " we think we got it all". I think I was over 8 years post op when the regrowth was found and I didn't have it removed until a few years after that ( had it monitored and it was continuing to grow and didn't want gamma knife so went back into surgery).
It is most upsetting to find out the little bugger is still alive I know. Hopefully it will grow slowly and or stop all together. Depending on current size you have time to consider options.
Take care
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

pistol2282

  • Newbie
  • *
  • Posts: 1
Re: Regrowth
« Reply #2 on: February 12, 2019, 09:20:00 am »
Hi Sherri,

I am currently going through a very similar story as you.  I had translab to remove a 4cm AN  in 2013 and 5 years later saw regrowth from the small piece left on my 7th CN.  I went through cyberknife 7 months ago.  It can be scary but for me I was doing what I had to do.  Not many options. I am happy to discuss more with you if you would like.  Just email me.

ColleenS

  • Full Member
  • ***
  • Posts: 135
  • Do not fear, for I am with you. Isaiah 41:10
Re: Regrowth
« Reply #3 on: March 08, 2019, 12:25:24 pm »
I had mine removed Translab as well... 15 months later it had grown back to almost the original size from the small fragment left on the facial nerve. I  had radiation done on mine. I am five months out and it looks like it is dying. My story is still unfolding of course. The swelling from the radiation is my main issue right now. It is manageable but unpleasant.
5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless Love them :)
Removed 99.9% tumor
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial & eye issues but tumor dying

golfguy49

  • New Member
  • *
  • Posts: 33
Re: Regrowth
« Reply #4 on: March 08, 2019, 03:54:33 pm »
I am very sorry to hear about these stories and sad to hear about the suffering you are enduring.  I pray for favorable outcomes.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  Currently evaluating surgery options vs. W/W.  Located in Chicago area.

October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.

jami

  • New Member
  • *
  • Posts: 37
Re: Regrowth
« Reply #5 on: March 09, 2019, 02:21:54 pm »
Thanks for posting this.

I am 6 months out, there was some left (they had to stop after 10 hours due to swelling) and it has grown. Am going through the decision-making of gamma knife vs surgery, as its affecting my facial nerve and some of the old symptoms are coming back (always feeling hung over). BIG BIG hugs to all of you who are going through it.

I remind myself that this is rarely fatal, and this forum reminds me i am not alone.

Jami
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @ UNC Chapel Hill
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
Cyber Knife being planned

Removal of rt auditory and balance nerves

Agate

  • New Member
  • *
  • Posts: 14
Re: Regrowth
« Reply #6 on: April 19, 2019, 08:10:15 am »
Has anyone had regrowth after GK.  I am 10 years out and it has continued to shrink.  Not due for another mri for 2 years.  I have recently had a pacemaker implanted that is suppose to be mri compatible.

 


anything