Well, I said I'd post a 2nd one today. This has to do more with the hearing loss and options. As you know by now, my hearing is gone on my tumor side, which is my LEFT side. For my non AN family, it is called SSD (single sided deafness....the term for unilateral profound sensorineural hearing loss) And, like I stole some of my info. from a fellow ANer's blog.....it is D E A F....that is the thing to stress, it is different than most people who are "hard of hearing". I hear NOTHING from the deaf side, so talking louder doesn't help :-) This also impairs the ability to tell where sound is coming from.
There are many handicaps that come along with SSD that most people aren't aware of. They include many life changes. Things that are uncomfortable are usually noisy settings, like social gatherings, family get togethers, meetings, stores, restaurants, driving (car noises, etc.), even not being able to be completely aware of your surrounding based on noise if biking, walking, etc.
Being only 3 months out from surgery and my brain has to compensate for every noise in one side, it puts pressure on the brain as to how to deal with all the extra noises. That can cause brain fatigue and physical fatigue. Supposedly with time the brains hypersensitivity in this matter should diminish some. As for now, listening when only one person at a time is easy. BUT if multiple people are talking, or there are loud noises like fans, appliances, TV, music, etc. in the background....the brain has a hard time deciding which noise to accept and respond to.
Well, hopefully that made sense. Now, on with a few options. There are limited options for those who have became deaf due to this type of tumor or surgery. It is called Bone Conduction. Some refer to it almost like a prosthetic verses a basic hearing aid. Basic hearing aids usually work with the Air conduction in the middle ear. For my situation, that isn't an option because the middle ear (or ear nerve) has been damaged. BUT there is an option of using the skull bone for vibration, conduction. (of course, I never knew there were 2 ways we received sound....feel like I'm back in college with all this research)
The one option I am really checking into is called BAHA (bone anchored hearing aid). It does require a surgery (usually outpatient) to implant a small titanium implant (abutment) behind your deaf ear. Then a sound processor would be later attached to it. Then sound is transferred through the bone of the skull, stimulating the cochlea of the good hearing ear. This doesn't actually make your ear work, but the processor picks up the sound vibrations, then the implant transfers the sound vibrations to the cochlea of good ear. The sound converts to signals sending them to the brain. WHEW, amazing how the brain works!! Don't even know if I completely explained it right, but it sure sounds amazing.
The other option is the TRANAEAR, which is where the ear canal is deeply molded so the instrument can work with bone conduction. This seems to be newer and I'm having a hard time getting good resources for this one.
I've spoke to my regular ENT, my Neurotologist and 2 Audiologist and they say due to my young age I should benefit well from the BAHA. I remember not even thinking of it a month ago. But, since I MUST be feeling better, I decided to get the ball rolling to even see if my insurance would cover it or anything (luckily my doctor and audiologist that specialize in them will do all the work for me.....they know how to 'term' things right, like I mentioned before "a prosthectic" verses and aid. Interesting to say the least, but just like a leg that is totally gone and you get a prosthetic, I have a hearing device/??? that is totally gone. Makes sense to me.
Now, I am not saying for sure I'm even doing anything. Takes a good month or more to hear from insurance. In the mean time, I am trying to get myself slowly into situations to try to get my brain used to this new way of life. Taking it slowly is the best way to do it, and results in less set backs later.
Well, that is enough for today!
PLEASE, fellow ANer's: if you have any good info., comment or send me an e-mail. I
If you think I'm crazy....say so. :-) Really don't know what I'm doing for now....just been some major changes in my life. I MISS my social 'calling' :-)
Wednesday, February 17, 2010
3 Months Post Op
February 9th, 2010 was my actual 3 month post surgical date. I find I haven't been as good at updating the blog...............which to me means things are getting better for sure!
When I look back, or hear others tell me stories of what they thought and imagined when reading my blog over the 1st 2 months, I for sure feel blessed and have came a LONG way! It's so crazy how at certain points you can think "is it ever gonna get better?"
I had an appointment with my Neurotologist in Detroit Monday. He said for all I've been through, my healing process is actually great. He told me (same as any doctor I've seen) that due to the extra brain swelling I got after surgery and the delayed facial paralysis, that would all increase my healing time as to feeling more like normal. He thinks be 6 months most of the little things like my odd balance issues and periodic facial fullness feeling should be pretty good. Although, after having major surgery like this and involving the brain, things can take up to about a year.
A lot of things are actually where your brain has to compensate for things. As for me, I have lost the hearing on my left side, and I have tinnitus (ringing, noises) in that side some. When something happens so suddenly to one side of the brain, the other works so hard to compensate. This also causes the body and brain to fatigue very easily. (for sure I have had that)
Right now for me I would have to say the hardest thing is being in social settings or noisy situations. I am trying to get myself back into things, but taking it slowly to see how it goes. I'm needing to put myself into some of these situations and hopefully that will help my brain get used to those things. (I honestly am not sure how all that works). I have been back in church for the past 3 Sundays. The first was terrible, but I wasn't feeling real great for the 2 days before. The past 2 weeks have been good, but it seemed really loud so I wore an ear plug just slightly in my good ear and it helped limit some of the noise. I could hear everything just fine.....just not super loud and straining on my brain. It was nice.
I also took the kids to a get together of the youths (and families) from church. A cardboard sled race. It felt GREAT to be comfortable enough to want to go. My balance was weird, but standing in packs of snow didn't help. My wonderful husband was great at lending himself for me to hold onto. :-)
I am going to post another post today with hopefully getting response or emails from other AN people that have some of the same issues.
BUT, I want to once again THANK everyone for all of your support on behalf of myself and my family. Prayers are a wonderful thing and would actually appreciate the continuing of them. Still have struggles, but it seems like each week things are better. Even enough to lead me to decisions I said NO WAY to just weeks ago (in my next post).
When I look back, or hear others tell me stories of what they thought and imagined when reading my blog over the 1st 2 months, I for sure feel blessed and have came a LONG way! It's so crazy how at certain points you can think "is it ever gonna get better?"
I had an appointment with my Neurotologist in Detroit Monday. He said for all I've been through, my healing process is actually great. He told me (same as any doctor I've seen) that due to the extra brain swelling I got after surgery and the delayed facial paralysis, that would all increase my healing time as to feeling more like normal. He thinks be 6 months most of the little things like my odd balance issues and periodic facial fullness feeling should be pretty good. Although, after having major surgery like this and involving the brain, things can take up to about a year.
A lot of things are actually where your brain has to compensate for things. As for me, I have lost the hearing on my left side, and I have tinnitus (ringing, noises) in that side some. When something happens so suddenly to one side of the brain, the other works so hard to compensate. This also causes the body and brain to fatigue very easily. (for sure I have had that)
Right now for me I would have to say the hardest thing is being in social settings or noisy situations. I am trying to get myself back into things, but taking it slowly to see how it goes. I'm needing to put myself into some of these situations and hopefully that will help my brain get used to those things. (I honestly am not sure how all that works). I have been back in church for the past 3 Sundays. The first was terrible, but I wasn't feeling real great for the 2 days before. The past 2 weeks have been good, but it seemed really loud so I wore an ear plug just slightly in my good ear and it helped limit some of the noise. I could hear everything just fine.....just not super loud and straining on my brain. It was nice.
I also took the kids to a get together of the youths (and families) from church. A cardboard sled race. It felt GREAT to be comfortable enough to want to go. My balance was weird, but standing in packs of snow didn't help. My wonderful husband was great at lending himself for me to hold onto. :-)
I am going to post another post today with hopefully getting response or emails from other AN people that have some of the same issues.
BUT, I want to once again THANK everyone for all of your support on behalf of myself and my family. Prayers are a wonderful thing and would actually appreciate the continuing of them. Still have struggles, but it seems like each week things are better. Even enough to lead me to decisions I said NO WAY to just weeks ago (in my next post).
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