Author Topic: Questions re: my partial tumor removal  (Read 5327 times)

Brendasue

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Questions re: my partial tumor removal
« on: September 21, 2013, 03:37:24 pm »
Hi I was wondering if anyone has had part of the tumor (inoperative) left without treatment ? I had my surgery in 2003 it was very large and due to risk of stroke/death the surgeons left part of the tumor but assured me the blood flow was cut therefor the risk of it growing back was gone. My first scan post surgery as well as second showed what I was told was like scar tissue growing and not the tumor? I'm hoping someone can reassure or let me know something as I am feeling symptoms again such as frequent more severe headaches, wierd vision off and on, some facial twitching. Any comments are much appreciated as I'm starting to freak out a bit

CHD63

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Re: Questions re: my partial tumor removal
« Reply #1 on: September 21, 2013, 04:18:22 pm »
Hi Brendasue .....

It seems unusual for surgeons to say the risk of a tumor growing back is gone.  Even if a single cell was left, there is always the risk of a tumor growing back.

Please do not freak out, but I would urge you to contact your doctor(s) soon and/or schedule another MRI.  When was your last MRI?

Many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Kathleen_Mc

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Re: Questions re: my partial tumor removal
« Reply #2 on: September 21, 2013, 09:37:01 pm »
Brendasue:
I came out of surgery being told tumor was 100% removed, no MRI follow up done until 8 years postop and was told what was showing was scar tissue, next year the "scar tissue" had grown and was sent back to surgeon who told me it was reoccurance of the original tumor and it was possible he had left a cell or two behind, it continued to grow until I had it removed.
My point is this....get it followed up!
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)

Gloria Nailor

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Re: Questions re: my partial tumor removal
« Reply #3 on: September 22, 2013, 07:56:25 am »
I had a small portion of my tumor left during my surgery, about 2%.  I had asked the surgeon to leave it if he felt I would have total paralysis In my face.  He told me there was a 67% chance of regrowth.  He also said that there was a 33% chance of it not regrowing  due to the blood supply being cut off. Two years later I just had gamma knife radiation because it did start to regrow.  It regrows very slowly, about 1 mm a year, so I wasn't experiencing any side effects from it regrowing.  I would definitely have my doctor search further for a cause of your symptoms.  Good luck and be well!
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

Brendasue

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Re: Questions re: my partial tumor removal
« Reply #4 on: September 22, 2013, 01:06:02 pm »
Thank you to everyone who responded to my post and yes I too was surprised to learn about the risk of the tumor growing back- as I fully believed everything the surgeons told me! I haven't had an MRI since 2006 per the surgeon and was told 2013 would be next but have no Health insurance presently so I'm a little stressed! I'm hoping to get it figured out soon.