Author Topic: Newly diagnosed  (Read 6605 times)

Telisa

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Newly diagnosed
« on: September 09, 2016, 07:16:52 am »
 :o  I was recently diagnosed with AN. My tumor is small. 4 mm. My mind is a total mess. The Doctor wants to put me on Observation... As I am reading all that I can, I am seeing early detection is crucial in surgery. Any advise would be greatly appreciated.
Upon hearing my prognosis, my mind was totally convinced that I should just have the surgery. After my follow up visit with the Doctor, I started second guessing what I had decided.
 :'(
Thank You,
Telisa
 

mac84

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Re: Newly diagnosed
« Reply #1 on: September 09, 2016, 08:08:30 am »
Telisa, hang in there. At 4mm you've likely got plenty of time to look at your options. Give yourself time to relax and look at the options. Many here have been watching/waiting for years.  ;D
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

Telisa

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Re: Newly diagnosed
« Reply #2 on: September 09, 2016, 08:54:29 am »
THANK YOU FOR THE ENCOURAGEMENT! :D

WhatnotGems

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Re: Newly diagnosed
« Reply #3 on: September 09, 2016, 09:58:07 am »
Telisa
I am also watching and waiting. I did get a second opinion from the House Clinic, we agreed to wait. The tumor is benign, I have lives with a second benign tumor for many years. These are slow growing so do not panic. and remember more people with bad results will post than those with good results.
June 2016 diagnosed Acoustic Neuroma is 11 x 7 mm
2005 diagnosed Pituitary Adenoma now 16 x 6 x 7 mm

Telisa

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Re: Newly diagnosed
« Reply #4 on: September 12, 2016, 12:28:05 pm »
My gut says get the thing out, the smaller the less chance of other damages. But I'm hearing much different. I have lost 80% of my hearing in that ear already. At 4mm how much longer for the other nerves to be damaged?

michellef08

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Re: Newly diagnosed
« Reply #5 on: September 16, 2016, 11:48:24 am »
Hi Telisa,
I totally understand the urge to just get the tumor out, which is what I did! If that is what your gut is telling you - then it can't hurt to get a few more opinions from experienced AN teams! The more experienced teams you speak with, the more you will know about your individual tumor (size, shape, location in relation to the facial nerve and ear canal, etc), and you will have a more educated view of your options. Radiation is a definite possibility with a tumor so small. Personally - I had my tumor removed using Middle Fossa and my surgeons preserved my hearing (I had only lost about 10%), and I didn't have a single facial or balance issue! I know I am not the norm, but just wanted to make sure you know there are success stories out there! Surgery is definitely a big deal with a lot of risks, but if you choose a very experienced surgical team, the risks are reduced somewhat. 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.

mcrue

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Re: Newly diagnosed
« Reply #6 on: September 17, 2016, 09:51:16 am »
and radiation deteriorates hearing according to Dr. Friedman, Dr. Wilkinson and the 2 doctors (Dr. Stieg and Dr. Selesnick) from Weill Cornell who stated that in the latest addition of Notes, (the ANA newsletter)

Those are highly regarded neurosurgeons; however, I have a feeling some world-renowned radiosurgeons (like Dr. Lunsford, Dr. Sheehan, and Dr. Chang) who perform Gamma Knife And Cyber Knife may beg to differ on the stats regarding hearing retention. 


« Last Edit: September 17, 2016, 10:54:24 am by mcrue »
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

mcrue

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Re: Newly diagnosed
« Reply #7 on: September 17, 2016, 09:56:29 am »
Always nice to hear about your great outcome Michelle.
It's tricky. I've been watching an intracanalicular tumor right next to the cochlea for three years and I have great hearing. Go figure. Then there are people like Telisa who have lost hearing with a 4mm tumor.
Keep in mind, a lot of us with really small tumors are encouraged by our doctors to watch them and not operate yet. The reason I'm so conservative is because of their counsel.
If doctors seem hesitant and cautious, then it's a good idea to listen to that.
It's good for people to get lots of perspectives.
Have a good weekend everyone.

While I was on "Watch & Wait", the theory of my Michigan Ear physician was to keep me away from the potential side-effects of treatment (surgery or radiation) for as long as possible. We were hoping it wouldn't grow.


« Last Edit: September 17, 2016, 10:54:48 am by mcrue »
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

Telisa

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Re: Newly diagnosed
« Reply #8 on: September 19, 2016, 09:19:52 am »
It's Great to get every an idea of options from every angle. I know the Neurosurgeons will come up with the right plan for me. (I hope)

Thanks for the encouragement. I have no family to turn to. So it helps to hear from you all.

<3 Telisa