ANA Discussion Forum

Useful Information => Physicians => Topic started by: Telisa on September 09, 2016, 07:16:52 am

Title: Newly diagnosed
Post by: Telisa 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
 
Title: Re: Newly diagnosed
Post by: mac84 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
Title: Re: Newly diagnosed
Post by: Telisa on September 09, 2016, 08:54:29 am
THANK YOU FOR THE ENCOURAGEMENT! :D
Title: Re: Newly diagnosed
Post by: WhatnotGems 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.
Title: Re: Newly diagnosed
Post by: Telisa 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?
Title: Re: Newly diagnosed
Post by: michellef08 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!!
Title: Re: Newly diagnosed
Post by: mcrue 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. 


Title: Re: Newly diagnosed
Post by: mcrue 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.


Title: Re: Newly diagnosed
Post by: Telisa 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