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).
Tuesday, January 26, 2010
Did steroid help????
The steroid was just a pac, so that means lots the 1st day, then each day less. After about 24 hours I could for sure tell it was helping a lot with the "internal" cranial pressure I was having and some on the "external....face, ear, muscle, etc.". I felt really good for about 2 days. It helped with making it through my grandmothers funeral stuff, but I think maybe I over did it those days too. I felt terrible over the weekend.
I'm on my last day of the pac and all of the external pressure and numbness and pain is strong. Not sure where to turn now, but have an appointment with my local ENT a week from Friday. It almost feels like I have a major ear infection and suddenly the tinnitus (ringing noises) have gotten worse. Some say it has to do with the weather changing.....back to cold and snow :-(
Dizzyness wise, I'm pretty o.k. unless I over do it or move too fast. I am driving more comfortably now, so I don't feel like I have to rely on someone else and that I'm stuck home.
Going out into public places, still not easiest & fun. The stimulation on my brain due to the hearing loss is crazy! Unexplainable actually (unless you've been there of course)! NOT the same a those who go deaf slowly!!! Your brain has some fast readjusting to do, in addition to trying to heal from the surgery, etc.
I guess I'm only 11 weeks and really not sure if it's too bad. Just NOT what I expected, of course :-)
I'm on my last day of the pac and all of the external pressure and numbness and pain is strong. Not sure where to turn now, but have an appointment with my local ENT a week from Friday. It almost feels like I have a major ear infection and suddenly the tinnitus (ringing noises) have gotten worse. Some say it has to do with the weather changing.....back to cold and snow :-(
Dizzyness wise, I'm pretty o.k. unless I over do it or move too fast. I am driving more comfortably now, so I don't feel like I have to rely on someone else and that I'm stuck home.
Going out into public places, still not easiest & fun. The stimulation on my brain due to the hearing loss is crazy! Unexplainable actually (unless you've been there of course)! NOT the same a those who go deaf slowly!!! Your brain has some fast readjusting to do, in addition to trying to heal from the surgery, etc.
I guess I'm only 11 weeks and really not sure if it's too bad. Just NOT what I expected, of course :-)
Wednesday, January 20, 2010
Back on steroids
Well, back on steroids. The issues I mentioned on last post were not getting better. I got my appointment rescheduled in Detroit this Friday. My grandma ended up passing away and funeral is Friday. She just found out a little over a month ago she had Lymphoma cancer and it was pretty much all over. She was taken care of with the help of hospice and went into a sleep for almost 4 days before passing. I am so glad she didn't have to suffer a long term of cancer pain. Due to her funeral I had to cancel appointment on Friday, but was also nervous of how terrible I have felt on & off. LUCKILY my neruotlogist from Detroit called me back. He was VERY kind and decided to go ahead and start a steroid. If I have no change for the better in a week, I need to get right in to see him, but if (and I pray) it is better, I should wait until the steroid is out of the system again and see how things go before returning. That is the difficulty with having the specialist far away, you can just get in easy.
Of course, my luck is that the steroid is the same one I was on at the time after my surgery that I had an allergic reaction to a medication. I was also on a pain medicine that the doctor and pharmacist said was more likely the cause of the rash.. But, I had to switch up both medicines anyways. SO, hopefully it wasn't the Medrol steroid I was allergic to. Now I will know....
Thanks again for all of the emails, comments, cards, and calls I have gotten over this long time.
Of course, my luck is that the steroid is the same one I was on at the time after my surgery that I had an allergic reaction to a medication. I was also on a pain medicine that the doctor and pharmacist said was more likely the cause of the rash.. But, I had to switch up both medicines anyways. SO, hopefully it wasn't the Medrol steroid I was allergic to. Now I will know....
Thanks again for all of the emails, comments, cards, and calls I have gotten over this long time.
Thursday, January 14, 2010
Not great update
I've had plenty people say they've checked the blog and not seen much and wonder.
Well, I'm bad, sorry.
My update isn't actually as good as some. The swelling/fullness/puffiness in the entire side of my surgery side is REALLY getting to me. Enough that I've scheduled an appointment with the neurotologist. Seems like it is getting worse everyday and it worries me because of the additional swelling I had in my brain after surgery, plus they were thinking I had a mastoid infection...possibly, and it almost feels like the facial paralysis is coming back. Just odd. Yeah, I'm only 9 weeks out, but I have found all these symptoms started getting worse after all the steroids, pain meds, and the antibiotic I was on all wore off.
When it comes to the brain, and all those nerves that these surgeries can effect, etc. it does worry me more. I literally get an actual swelling that runs down the side of my face from my cheek bone to up above my ear and a ways into the middle of the incision area. It is about 2" thick in width when it does it. It throws my speech off some at that time too, and increases the fullness and pressure in my head. Makes my ear inside painful. I have been told I'd take longer for healing, but I've been doing nothing to overdo it, etc.
Good news is the only time I really notice the tinnitus is when that swelling/fullness hits it tends to get high. Sometimes I notice a little when it is totally quiet. Still doing rehab for my neck and back and that helps greatly. I don't use prescription pain meds for weeks now and usually o.k. with over the counter if needed (no med helps with the fullness/pressure/swelling pain though). Rehab also helped my balance a lot too. That does go off though with those other symptoms too.
Mentally not always in the greatest place. I honestly thought I was gonna be one of those surgeries that worked out just fine and had my hearing, etc. WRONG, way off. Oh well, dealing with it as I can.
I think Trenton is having the hardest time with it because he wants me back volunteering at school. I told him I'm not used to the deafness on one side yet, and those other symptoms hit witout warning, so not a good idea. It's hard enough being around more than one person, I can't understand what's being said, etc. Plus if the noises get too loud it makes me sick feeling.
As for driving, thanks to the darling snow and the fact I'm not a good winter driver AND these symptoms flaring whenever, I haven't even attempted it. That is working out o.k. though, things work out just fine.
Hopefully that gives a few updates.
Thanks for thinking of me and the continuing prayers, etc.
Denise
Well, I'm bad, sorry.
My update isn't actually as good as some. The swelling/fullness/puffiness in the entire side of my surgery side is REALLY getting to me. Enough that I've scheduled an appointment with the neurotologist. Seems like it is getting worse everyday and it worries me because of the additional swelling I had in my brain after surgery, plus they were thinking I had a mastoid infection...possibly, and it almost feels like the facial paralysis is coming back. Just odd. Yeah, I'm only 9 weeks out, but I have found all these symptoms started getting worse after all the steroids, pain meds, and the antibiotic I was on all wore off.
When it comes to the brain, and all those nerves that these surgeries can effect, etc. it does worry me more. I literally get an actual swelling that runs down the side of my face from my cheek bone to up above my ear and a ways into the middle of the incision area. It is about 2" thick in width when it does it. It throws my speech off some at that time too, and increases the fullness and pressure in my head. Makes my ear inside painful. I have been told I'd take longer for healing, but I've been doing nothing to overdo it, etc.
Good news is the only time I really notice the tinnitus is when that swelling/fullness hits it tends to get high. Sometimes I notice a little when it is totally quiet. Still doing rehab for my neck and back and that helps greatly. I don't use prescription pain meds for weeks now and usually o.k. with over the counter if needed (no med helps with the fullness/pressure/swelling pain though). Rehab also helped my balance a lot too. That does go off though with those other symptoms too.
Mentally not always in the greatest place. I honestly thought I was gonna be one of those surgeries that worked out just fine and had my hearing, etc. WRONG, way off. Oh well, dealing with it as I can.
I think Trenton is having the hardest time with it because he wants me back volunteering at school. I told him I'm not used to the deafness on one side yet, and those other symptoms hit witout warning, so not a good idea. It's hard enough being around more than one person, I can't understand what's being said, etc. Plus if the noises get too loud it makes me sick feeling.
As for driving, thanks to the darling snow and the fact I'm not a good winter driver AND these symptoms flaring whenever, I haven't even attempted it. That is working out o.k. though, things work out just fine.
Hopefully that gives a few updates.
Thanks for thinking of me and the continuing prayers, etc.
Denise
Wednesday, January 6, 2010
Latest
Still more, but I can only do a bit at a time!!
Here is our snow....lovely living close to Lake Michigan and the lake effects. This is of our big deck around the pool.....I think the railings are about 42"..?? (yeah, where's the pool!)
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Tuesday, December 29, 2009
Holidays and ear
I meant to get on and wish everyone a Merry Christmas...sorry I missed it. Hope all went well and with the icky icy weather we had here (in MI for sure) everyone was safe.
Ours was well. Christmas eve was my 1st negative hard hit with the SSD (single sided deafness)....I'm figuring that is what it is for sure, even though I still feel swollen and fullness on that side. I sat at a table and conversation was going on amongst about 8 people, and I don't think I got any of it......THAT stunk. Don't help that I'm still off in areas, but wow....that was weird.
Tinnitus has gone down a lot too, just don't understand the swelling felling and fullness. If mastoiditis infection, my antibiotic of 30 days is about up...hmmm
Well, I hope everyone has a Happy New Year!!! A lot of people from our church usually get together play games, puzzles, cards, eat, etc., the kids always love it. Not sure I'm into all that noise this year. Neil is on call that night and works both days but might take the boys for awhile. It will be at one of his cousins houses this year and should be a good time.
So, here's to wishing us all a HAPPY NEW YEAR!!!!!!!!!!!
Ours was well. Christmas eve was my 1st negative hard hit with the SSD (single sided deafness)....I'm figuring that is what it is for sure, even though I still feel swollen and fullness on that side. I sat at a table and conversation was going on amongst about 8 people, and I don't think I got any of it......THAT stunk. Don't help that I'm still off in areas, but wow....that was weird.
Tinnitus has gone down a lot too, just don't understand the swelling felling and fullness. If mastoiditis infection, my antibiotic of 30 days is about up...hmmm
Well, I hope everyone has a Happy New Year!!! A lot of people from our church usually get together play games, puzzles, cards, eat, etc., the kids always love it. Not sure I'm into all that noise this year. Neil is on call that night and works both days but might take the boys for awhile. It will be at one of his cousins houses this year and should be a good time.
So, here's to wishing us all a HAPPY NEW YEAR!!!!!!!!!!!
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