Author Topic: 9years retrosigmoid surgery  (Read 2797 times)

palms0@hotmail.com

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9years retrosigmoid surgery
« on: October 13, 2015, 09:58:16 am »
Have had so many issues for the past 9 years , but now I have fullness & ringing just like when this disaster started! Last MRI 2 years ago showed the still enhancing 5mm that was left behind, after I was told it was a total resection!
I would never go thu surgery again, so what do I do now? I want to either wait & watch or a non surgical treatment.
Any advice would be helpful.
Really not sure if I would go back to Jefferson either, so other area options would be considered.
Thanks in advance.
9mm retro sigmoid drs. evans and willcox jefferson hosp phila
facial palsy, external eye weight, headaches 24-7, incisional pain 24-7, balance issues
i was a 46 yo happy active man, now this surgery has ruined my life
I WANT MY LIFE BACK!
ps still have 4mm enhancing area :(

mcrue

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Re: 9years retrosigmoid surgery
« Reply #1 on: October 13, 2015, 02:16:12 pm »
Hi,

I wish you better outcomes for the future. Reading your profile and signature at the bottom really made me feel for you. I hope you get better results sooner rather than later, especially after 9 years. If you "don't want any surgery anymore" then it's my understanding that the traditional thought is radiation treatment. I believe the most experienced doctors are Dr. Chang at Stanford with Cyber Knife and also Dr. Lunsford in Philly with Gamma Knife. My thoughts and prayers are with you.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Dee-dee

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Re: 9years retrosigmoid surgery
« Reply #2 on: October 16, 2015, 07:50:54 am »
Hi

I really feel for you.  I am 4 years post gamma knife and still have numerous issues, but my tumor was a lot larger.

Gamma knife radiation is one option for you.  The experts in this in New York are Dr. Golfinos (NYU) and Dr. Sisti (Columbia). There are probably others that I am not aware of or cannot recall at the moment. My view is that watch and wait is o.k. but you should know that the larger the tumor the longer you will be in the machine receiving radiation.  It may be a difference of being in the machine for 20 minutes versus 45 minutes or more, depending on the size and angle of the tumor, which most doctors failed to tell me when I was considering gamma knife.   I think the less time spent under radiation, the better, concerning side effects from the radiation.  But this is is just my own personal opinion.   I was the last to be radiated and was in there for over 45 minutes due to the size of the tumor and its location (pressing against the brain stem).  Everyone else before me was in there for less than 25 minutes.

I wish you all the best.

2.3 cm AN.   Hearing loss and other symptoms. Gamma knife 2011.

palms0@hotmail.com

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Re: 9years retrosigmoid surgery
« Reply #3 on: October 20, 2015, 08:48:27 am »
Thank you for your kind words.
9mm retro sigmoid drs. evans and willcox jefferson hosp phila
facial palsy, external eye weight, headaches 24-7, incisional pain 24-7, balance issues
i was a 46 yo happy active man, now this surgery has ruined my life
I WANT MY LIFE BACK!
ps still have 4mm enhancing area :(

v357139

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Re: 9years retrosigmoid surgery
« Reply #4 on: November 20, 2015, 10:03:11 pm »
I am so sorry for your troubles.  5mm is not big, so I suggest at least considering watch and wait, as long as a doctor agrees it is safe to wait.  Sometimes there are side effects with Gamma knife and Cyberknife also.  You want to consider that as well, especially considering your other issues.  Gamma knife and cyberknife also usually take years to know if they worked or not, fyi.  Someone mentioned Lunsford and Chang, those are great names in radiosurgery.  You might as well consult one of them do get their take, does not mean you have to move forward right away, unless they say you must.  But you can get the information now.  You should be under some doctor's supervision for sure to monitor the growth.

Again, sorry for your troubles.  Keep us posted.
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!!