Author Topic: Should I shake the tree?  (Read 6291 times)

Toadlee

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Should I shake the tree?
« on: April 09, 2012, 09:51:08 pm »
Hi all;
Can I get your advice? A couple years ago I started losing my hearing in one ear. I had an MRI which was clear and I got a hearing aid. It's continued to decline and last month I took my hearing aid in for tweaking and the audiologist was quite firm that I go back to the ENT sooner rather than later. I'd lost another 25 db across the whole spectrum in less than a year. I also have full-on tinnitus, which is aggravated by touching my eye or tragus, recruitment and a single episode of vertigo.
I made my appointment but could get nothing soon. I still have 3 weeks before I can get in (stanford). My hearing continues to deteriorate, now I can't even hear a dial tone on the phone. What I can hear is distorted and off key, pretty useless.
Should I press the dr's office for a squeeze-in? I've done a lot of web-surfing,and see that steroids may help within a certain window, and that most loss can't be reversed. And since my MRI was clear it's probably not a tumor.
You all know more than anyone how the system works, so I'm hoping you'll weigh in. Not on whether I have an AN, but on whether making a fuss is called for and may save/recover some hearing.

Suu

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Re: Should I shake the tree?
« Reply #1 on: April 10, 2012, 12:03:57 am »
IMO shake the tree as hard as you can.

Our instincts usually tell us that something needs to be seen to quickly and just reading your post, I can feel that you need to be seen.
I don't know how the medical profession works over there (I'm an Aussie) but over here they'd squeeze us in if we're polite, say please a lot, and beg.  Then thank them for it with all of your heart and soul because they then have the feeling that they've done a very good thing and someone has thanked them.

Good luck!

Suu xxoo
« Last Edit: April 11, 2012, 02:05:07 am by Suu »
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Jim Scott

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Re: Should I shake the tree?
« Reply #2 on: April 10, 2012, 12:53:57 pm »
Toadlee ~

I would be doggedly persistent with the doctor's office .  Stress that this is a medical emergency, not a routine visit.  You're rapidly losing your unilateral hearing and need to see a doctor, now, not weeks from now when it could be too late.   If all else fails, go to the ER.  They may not help but you can implore them to try to help you get into Stanford sooner than three weeks.  We wish you much luck.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sunfish

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Re: Should I shake the tree?
« Reply #3 on: April 11, 2012, 12:32:19 pm »
Yup.  I agree.  You could go to the ER, if nothing else seems to be coming together for you.  I think the ER might recognize this is an emergency.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

Toadlee

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Re: Should I shake the tree?
« Reply #4 on: April 11, 2012, 01:53:30 pm »
Thanks for the responses everyone; I screwed up my gumption and called them but they wouldn't budge. Aparently this dr only does office hours one day a week and is booked solid until then. I live in Oakland, about an hour or so from Stanford. The ER's around here are pretty horrific; I've been in them a few times for injuries and they are meant for trauma and heart attacks (oh, and people who don't have any other options).

Anyone here been to Stanford? I heard it was the best, I'm seeing Dr. Oghalai, but I've heard Chang (?) is good too.

leapyrtwins

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Re: Should I shake the tree?
« Reply #5 on: April 14, 2012, 06:40:58 pm »
Dr. Chang is one of the best.

As for your hearing, make an appointment with a neurotologist in your area.

You should definitely get this checked out, but keep in mind that sometimes people lose hearing for no medical reason. 

I know several people with BAHAs who fit that bill.

Good luck - and keep us posted,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Toadlee

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Re: Should I shake the tree?
« Reply #6 on: April 14, 2012, 09:56:34 pm »
I'm wondering about baha's and cros' too. I have heard that bahas are for conductive loss, but maybe I'm wrong. I don't have much left in the bad ear, but its sensioneural loss.  The HA just seems to amplify the noise, so I've stopped using it in that ear. Works far better in my good ear. With a baha, there's a bolt in my head (where, exactly) which transmits sound to the good ear, right? Does the good ear get some kind of receiver?

How is it different from Cros? Also, if I have something degenerative, like meneires, then my good ear will probably succumb as well. What then? I've been trying to chase my hearing with an aid, but feel like it was a waste of money. If these aids rely on a good ear, and I lose that one too, will they still work?

If I sound a bit irritable, forgive me. I'm surprised by how strongly I feel about losing my hearing. I remember as a kid, I read about Helen Keller and mused about which sense would be hardest/easiest to lose. I remember thinking it wouldn't be so bad to lose my hearing. Ha! 

leapyrtwins

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Re: Should I shake the tree?
« Reply #7 on: April 22, 2012, 03:33:35 pm »
Toadlee -

BAHAs are for sensioneural loss (which I have as a result of my AN surgery).  They work through bone conduction; the "good" ear has no receiver - or anything else.  No sound is actually transmitted to the "good" ear, but the wearer has that perception.  The abutment (what you refer to as the "bolt") is implanted into the skull.

For more information on how the BAHA works, go to Cochlear's website (www.cochlearamericas.com) and search on BAHA.

I never really looked into the Cros, because I liked the BAHA demo so much and because my neurotologist thought the BAHA was best for me.  But I believe the Cros is more like a conventional hearing aid, in the sense that there is no implant into the skull and you wear the processor (aid) on the ear, or perhaps the ears.

There are different strengths of BAHA processors so if you have hearing that is less than perfect in your "good" ear, you'd wear a stronger processor.  However, if you lost hearing completely in your "good" ear, the BAHA wouldn't work.  At that point, you'd probably be a candidate for a CI (cochlear implant). 

Check with your audiologist.

Jan   
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Suu

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Re: Should I shake the tree?
« Reply #8 on: April 24, 2012, 12:52:18 am »
Hi again Toadlee

Have you found any more answers?  How are you feeling and dealing with what you're going through now?

Best wishes,

Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Toadlee

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Re: Should I shake the tree?
« Reply #9 on: April 24, 2012, 11:02:59 am »
Hi Suu;
Thanks for thinking of me. My appointment is on Thursday, hoping to get some info then. I'm scheduled for an audiogram and dr. visit. My poor ear had pretty much given up on me, just a bit of noise left, then, bammo, it came back. Not wonderful, but I can hear a voice on the phone again! And the tinnitus has calmed down a lot too. I can't think of what I might have done to affect such an improvement, but whatever it was, it sure is nice to tell where sound is coming from!

Toadlee

Toadlee

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Finally saw dr.
« Reply #10 on: April 27, 2012, 10:27:11 am »
It took a couple months, but I finally saw the dr. Of course, by the time I got in, the hearing had returned (mostly) to my bad ear. He said it's probably Meniere's and offered me a low salt diet. Then he said why did you wait so long to come in? Arrgggh...

pjb

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Re: Finally saw dr.
« Reply #11 on: April 27, 2012, 10:42:03 am »
It took a couple months, but I finally saw the dr. Of course, by the time I got in, the hearing had returned (mostly) to my bad ear. He said it's probably Meniere's and offered me a low salt diet. Then he said why did you wait so long to come in? Arrgggh...

Just had to chime in "probably Meniere's", I hope it is but that can be debilitating also but why not an MRI to make sure or did I miss that you had one ???... My coworker has Meniere's and as long as she stays on a strict low salt diet you cannot believe the difference it works wonders also you can try Vestibular Therapy I think they use that with this disease as well... Good luck

Best Wishes,
« Last Edit: April 27, 2012, 11:49:52 am by pjb »
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.