Author Topic: Newly Diagnosed, Surgery Next Week  (Read 624 times)

OllieO

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Newly Diagnosed, Surgery Next Week
« on: September 12, 2017, 01:53:01 pm »
Hello,

My name is Ollie, I am a 28 year old serving in the U.S. Air Force. After several years of tinnitus, some minor hearing loss, and different military doctors giving me mixed answers, in July it was discovered I have a 2.9cm acoustic neuroma on the left side of my brain. I was referred to the hospital at the University of Birmingham Alabama, where I met with the Otologist and Neurologist. The doctors both agreed that the best course of action for me given my age and the tumors location (it is growing away from my ear canal and pressing on my cerebellum) is the translabyrinthine method which will take away my ability to hear on the left side. After doing some research it does seem like that would be the opinion of most doctors with patients that have my similar circumstances. My largest concern is obviously my hearing, since I am 28 and still single I feel like this will be a challenge for dating and future relationships. Does anyone with similar circumstances know what my options for hearing assistance are? Also, are there any statistics on permanent or long-term facial paralysis? Finally, I would appreciate any additional advice going forward with this process, I have a decent support system, but the diagnosis has still been a jarring ordeal. 

Sorry for using any incorrect terms, I've a wide variety of medical nomenclature thrown at me in the past couple of months, lol.

ColleenH

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  • Do not fear, for I am with you. Isaiah 41:10
Re: Newly Diagnosed, Surgery Next Week
« Reply #1 on: October 03, 2017, 01:54:56 pm »
Hi, Ollie. I have decided not to get any kind of device for my SSD. I had the trans lab surgery since most of my hearing had been lost by the time the tumor was discovered. I can hear just fine most times except for in a crowded restaurant or meeting where there is a lot of talking and/or background noise. From my research, those situations are where the hearing aids fail. That is why I have decided not to pursue a device at this time. I would wait a good six months before deciding on anything and see how you adjust first. As always, we are all different. Do your own research on the devices available to you. Good luck,
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

alabamajane

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Re: Newly Diagnosed, Surgery Next Week
« Reply #2 on: October 03, 2017, 06:42:14 pm »
Hi Ollie and welcome,,, sorry for your diagnosis though,,, you are in good company,, we have all been in your situation,,

I had my surgery in 2011  at UAB probably with the same doctors you saw. It is a wonderful facility and knowledgeable, experienced doctors. I had translab and am SSD. It is not that bad and you can adjust to it however I did get a Cochlear BAHA device after 3 years and am very happy with my new 5 Power processor. It does help a good bit but nothing will give you back your hearing.

If you want a very helpful second opinion,, House Clinic  in Los Angeles will give you a free phone consult after you send them a copy of your MRI. I did this and it was most helpful in my decision making. I would like to have gone out there but wasn't able. You may decide to use them if you are able

Another good second opinion is Vanderbilt in Nashville. They have excellent doctors and many on here have used them. You may get a suggestion of treatment that could save some hearing. Remembering there are no guarantees in this procedure.

You don't sound like your symptoms are real bothersome at this point but your tumor is large. You have some time to research and decide. We aren't medical professionals but have been there and can give you advice.
Good luck

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

OllieO

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Re: Newly Diagnosed, Surgery Next Week
« Reply #3 on: October 09, 2017, 04:16:26 pm »
Thanks for the information. I've since had the surgery at UAB and so far no major issues besides headaches and the expected hearing loss. I've tried to get out into crowded busy places and also socialize with my family. It is difficult to listen to multiple sounds, noises, and voices at once. But I'll take the above advice and give it a few months before I decide on any hearing devices. Also, not sure if it's the norm, but I "hear" my pulse on my left side, the deaf side, CONSTANTLY

alabamajane

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Re: Newly Diagnosed, Surgery Next Week
« Reply #4 on: October 10, 2017, 07:50:21 am »
Congrats on a successful surgery. So glad you are recovering well.

Take some time to heal. I never heard my pulse I don't think,,, but this may lessen with some time,, your brain is trying to recover from surgery impact and learning to process hearing differently. With time, you will adjust to these differences,,

Thanks for update,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26