Author Topic: What to do Second Surgery or Gamma Knife  (Read 3962 times)

polaka12

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What to do Second Surgery or Gamma Knife
« on: March 26, 2016, 08:59:54 am »
I had a partial removal retro sigmoid in July of 2013. They left a piece in with the idea to preserve the facial nerve and hearing  and radiate if regrowth happened. Well it is regrowing but I am not sure I want to radiate now. I think I would rather get this thing out of my head.  I'm thinking of having surgery again with either my surgeon or House Clinic doing a translab approach to remove it completely. I have no hearing now so it changes things.  I need some advice on people who had to make this decision a second time around.

Kathleen_Mc

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Re: What to do Second Surgery or Gamma Knife
« Reply #1 on: March 27, 2016, 04:48:47 am »
Basically you need to "pick your poison".....which is worse, the idea of becoming hearing impaired (as well as all associated losses that may occur) or the idea of the tumor still being in there and possibly the radiation not being effective and you require further treatment of some sort later?
This is a very personal decision.
With my first surgery I hadn't any choice, gamma knife not in Canada at that time (not even sure was in the states yet) and even if it was my tumor was too large.....therefor when it came to getting the regrowth dealt with the idea of radiation didn't appeal to me....I mostly needed the regrowth removed when I choose to have it out because the idea of it being in there was psychologically distressing for me. (and I had already lost all there was to loose the first time around)
Just my thought on this
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)

polaka12

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Re: What to do Second Surgery or Gamma Knife
« Reply #2 on: March 27, 2016, 08:40:35 am »
Thanks. I am like you I am scared of radiation at this point. I would rather have them go in by translab and remove all if possible. I lost hearing so it's gone. I can get a hearing implant at that time too. My doc is going to lean me more towards Gamma I'm sure of it but I will find out next week. I'm only 39. I feel I am strong enough for another surgery then if it regrows after then I will radiate. Thanks for your comment.

michellef08

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Re: What to do Second Surgery or Gamma Knife
« Reply #3 on: March 28, 2016, 11:25:22 am »
At House, Dr. Schwartz removed my tumor completely even though it was "sticky to the facial nerve". From my surgical report - he had to come at it with different tools, from different angles, but I had zero facial issues at all! I would recommend sending your MRI there for a free phone consult! I would assume your main concern for this surgery will be your facial nerve, as that is why it was left behind. I loved the thought of surgery because then the tumor would be removed completely. (I also never had radiation presented as an option for me as I was only 27).

If you go with your same surgeon, do you think they will change their risk tolerance to get more of the tumor vs. saving your facial nerve? Or would they leave the same amount of tumor behind in order to preserve your facial nerve again? Just something to think about..

Good luck!
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

polaka12

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Re: What to do Second Surgery or Gamma Knife
« Reply #4 on: March 30, 2016, 10:08:19 am »
Thank you for your replies.  I am seeing my doctor on the 12th.  Sent my MRI to House Clinic and am seeing Dr. Bartels in Tampa and Dr. Agazzi in Tampa.  So I will get all opinions and options and will go with my gut instinct in the end.  I appreciate the input.