Author Topic: Questioning my decision- your thoughts?  (Read 1102 times)

Shah_jl

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Questioning my decision- your thoughts?
« on: October 24, 2018, 01:01:56 pm »
Back in 2016 , I was diagnosed with a 14 mm AN. July of this year I had middle fossa surgery and the tumor was at 17 mm. I recently had a 3-month MRI to make sure I did not have a CSF leak. It was determined that there was no leak but the doctor was quite surprised that there was still a significant portion of the tumor remaining. His approximation a size is 11 by 5 mm. My husband is pretty sure the surgeons told him after surgery that they had removed most of the tumor. So did my tumor grow that much in three months? Or was that much tumor left behind to preserve my facial nerve? I'm not sure how I feel because I definitely preferred to save my facial nerve, but not looking forward to either having another surgery or radiation so soon after surgery. I have a follow-up MRI in April of next year, and at that time they'll be able to see how much the tumor has grown from my first base line image, but I'm thinking it's already too big and have some mixed feelings. I actually dont know how I should be feeling! What are your thoughts? Deciding whether or not to continue to watch and wait was a hard decision. It was an even harder decision to choose surgery over radiation. But now I feel like I'm back to where I started, minus the perfect hearing I lost. Which I was ok losing my hearing if I was losing a tumor!

ANSydney

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Re: Questioning my decision- your thoughts?
« Reply #1 on: October 24, 2018, 03:31:22 pm »
How about taking MRI images every 6 months and seeing what is happening. Keep the CDs as you may have to approach someone with all the images to double check before any potential intervention.

sg_way

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Re: Questioning my decision- your thoughts?
« Reply #2 on: October 25, 2018, 03:25:48 pm »
Did you send your 3 month MRI to Dr. Friedman and Dr. Schwartz for review? I heard UCSD give their patient MRI right after the surgery so you should be able to know how much they left behind and that should be your baseline IMO.

Shah_jl

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Re: Questioning my decision- your thoughts?
« Reply #3 on: October 25, 2018, 10:33:19 pm »
Sydney I will have another MRI in 6 months, and I do have all my cds.
 Sg_way- Dr Friedman and Schwartz did the surgery. I did not have a MRI right after surgery. Due to post op swelling etc, I was told it would be unreliable. I only had this 3 month MRI to rule out a leak due to a symptom I was having.

v357139

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Re: Questioning my decision- your thoughts?
« Reply #4 on: January 17, 2019, 09:52:18 pm »
Shah,
You could ask the surgeon what the story is.  Ask him if they left some in to protect the facial nerve or other structure, and how much.  You can also ask the facility for the Operative Report.  It is a report of what they did.  Mine did mention that they left some in.  Although it did not say how much.  But perhaps yours might?

The main thing will be the next MRI.  If it has not grown at all, then you will have alot of time to consider the next step.  Don't get ahead of yourself thinking about all the what ifs.  That can drive you crazy.  Wait for that next MRI. No growth would be great news, and you would be able to look at things in a positive light from that good news.  Hang in there.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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